Most of you may recognize the first two acronyms above, but not the third. An ABR is a hearing test. Jaxson has fluid in both ears, and this test will show if his nerves are working correctly or if he's going to have some kind of hearing loss. I've taken him to the audiology department twice, but he's supposed to sleep through the test and he won't do it. So, since he is under anesthesia today, I was able to arrange for them to do it while he's in recovery. Hopefully I'll get some answers!
Jaxson is also having his brain MRI, spinal MRI and brain 3D CT. The 3D image and spinal MRI are in preparation for his two surgeries. The brain MRI has been ordered by genetics to see if there's any abnormality in his brain that would cause his bones to fuse early. I have no idea if I'll get the results today or not, but I hope I walk out of here with at least a little bit of knowledge.
So I've been here since 9am and Jaxson is still getting his tests done. It's giving me a little taste of what's going to come on Monday and I can say I don't like it one bit. Jayson came down for a little bit and I got to see Jeffrey, which was nice, but he had to go take a nap so I'm hanging out by myself. At least on Monday I will have company. Sara is nice enough to watch Jeffrey for us, so I'll have Jayson with me the whole time. Mom and dad are both taking the day off of work, so they'll be there too and Sam is coming up from Dayton to visit for a little while. Regardless, it's going to be a very long day.
I'm going to have to remember to bring extra blankets on Monday, though. It is freezing in here! I have my huge winter jacket on and a blanket over my legs. My fingers are purple!
In brighter news, I started some medication almost 2 weeks ago and it seems to be doing the trick. I feel like I have a good grasp of what's going on and how to deal with it now. I'm still worried that something is going to happen to Jaxson, but I don't feel like it's taking over my life. I feel like I can function again and I've been able to play with Jeffrey and do my job at work. I don't feel like it's giving me a fake happy, which is nice, but definitely evening me out. The only major side effect I have from it is that it makes me tired, but that is getting better every day, so hopefully I'll feel normal again soon.
Jeffrey is such a good big brother. He is always trying to help with feeding and calming down Jaxson. And Jaxson just laughs at him! It's hysterical. And today when Jayson brought Jeffrey up to see me after he went to the clubhouse, he asked where baby brother was. I didn't even know what t say. I just told him brother was busy. Next week is going to be as hard on Jeffrey as it is on me and Jayson. I'm so glad I took the week off so I can spend some time with him. He's so sensitive to everyone around him and he picks up on our stress so easily. He's such a sweet little boy!
Now I've been here for about 4 hours and Jax is still getting his scans done. At least, according to the tracking on the monitor he's still in procedure. Hopefully he'll be done soon so I can at least go see him, even if he is still asleep. Jeez, if I think this is hard, what is Monday going to feel like? I've only been way from Jaxson for 2 hours and Monday is a 4.5 hour procedure. Ugh. Trying not to think about it too much for now. I guess I'm gonna try and eat something and cross my fingers that someone comes to get me soon! Prayers please.
Thursday, November 1, 2012
Thursday, October 18, 2012
Um...
I don't even know what to title this blog. It's going to be a mishmash of several different things since there's a few updates on Jaxson and I need to vent about my own stuff. On the positive side, Jayson and Jeffrey seem to be doing just fine. Jeffrey has been attached to me lately, I think mostly because I haven't been able to spend much time with him and he can tell I'm not doing that great. But he's doing great, recognizing numbers and playing outside a lot while it's still nice. Jayson has been a trooper keeping the house clean and taking care of me and the boys. He makes sure we have food in front of us when we need it and that I bring lunch to work with me. He knows I won't eat unless he sends something with me!
So that brings me to Jaxson. In the last post I noted that he would have a brain MRI, spinal MRI and 3D image of his skull on November 1, followed by his skull repair on November 5. He had an ENT and neonatology appointment this week, followed by an follow up audiology screening. The ENT, by pure dumb luck, is the doctor that's part of the craniofacial team so he would have been following Jaxson anyway. He said that Jaxson has fluid in both ears and will need tubes. All babies with cleft palate's need tubes because their anatomy is incorrect. What I didn't know was that he'll have his first set at six months. Yes, I said first set. He will end up with several sets of tubes because they only last a year to a year and a half. Sure, it's pretty common, but for me it's just something else to add. Jax is supposed to have tubes around the same time as he is supposed to have his spinal surgery. So now I have to figure out how to get everything done and not have him undergo surgery before he's healed from the previous procedure. I'd like to have the tubes before the spinal surgery, so it will just be a matter of coordinating between the two offices. If you have ever had to coordinate anything between two different departments at any hospital, you know how much fun that's going to be!
Jaxson's neonatology visit went okay. The occupational therapist said that he should be seen once a week to ensure his fine motor skills get back on track. He's still behind on a lot of things, but it's all mostly because he was in a hospital bed for 6 weeks. He's definitely moving in the right direction, but there's still some work to do. They also referred him to a low-vision specialist because he's not tracking well with his eyes. I think he can see because he responds to smiles and faces, but I'm not sure how well he sees. They are supposed to call to schedule the appointment, but they haven't yet so I may have to call soon. I would like to have some kind of base test before he has his skull repair to see if his eyes are affected by the surgery. Jax has also been getting pretty sick lately and has been a little constipated too, so the nurse practitioner called neurology to see if they thought it could be due to pressure in his head. Thankfully, they don't think that, so we made some adjustments to his feeding schedule and he actually has not thrown up more than once a day for the last two days. And that's saying something since he was getting sick up to 4 times a day before that, so lets hope it continues!
Those appointments were Monday and Tuesday, respectively, and then on Wednesday he had a follow up hearing screening since the first one was inconclusive. Unfortunately, Jaxson didn't want to stay asleep so we couldn't complete the test. And he had a pretty tough day at neonatology the day before (he got pretty sick) so I didn't want to push it. They're going to try and schedule the screening for November 1 when he has to have anesthesia for his scans. Since he'll already be under, testing his nerves won't be an issue.
With everything getting scheduled and coming together, I'm finally starting to feel everything sink in. I'm tired all the time, no matter how much sleep I get. I'm emotional and sensitive. I mean, I know that this isn't a horribly uncommon surgery, but they're cutting my kids head open. I know that's a pretty carport way to word it, but it's the only way I can get people to kind if picture it and understand why I'm so moody. Today was actually a good day, but the last few days have been really hard. I have no idea how I'm going to handle things when the time comes. I'm going to the doctor tomorrow to discuss options for getting through this. I feel like I mostly have a good handle on everything, but I can feel the pressure coming on and I want to be able to function normally as things continue to happen.
Honestly, I think I would be okay if it was just one thing or another, but the combination of Jaxson's issues combined with money issues and trying to cope with being a working mom and giving Jeffrey the attention he needs is just becoming too much. I love my kids and my family too much to let anything go by the wayside, so I feel that it's time for me to admit that I need help and go get it. And not just financially.
Speaking of money, I am so tired of people posting that stupid meme that says, "if you can afford an iPhone you don't need food stamps". Do your research people. I have an iPhone. Are you telling me that suddenly I have to give it up because I have a medically ill child and my husband can't work? Not to mention that you have to jump through 5000 hoops just to qualify for assistance. I started my application process back in August and I still have nothing to show for it because we have to get letters from Jayson's past employers stating he doesn't work there. And they won't give you anything if you have no income. If you've never been through the process then you have no idea how hard it is to even accept the fact that you need help. And then to see something like that all over the Internet makes you feel even more guilty when it was made by someone completely ignorant of how government assistance programs work. The people who abuse the system are so few and far between its ridiculous. Don't judge just because you think people take the easy way out. It's not actually easy. Don't take away from those of us that need it and pay into it while accepting the help it provides. And this isn't political. It's personal. Here's some food for thought: how much is your annual salary? Now imagine a family of 4, a one income household, living on your salary alone. Not much is it? Now imagine that that family doesn't qualify for assistance because they make too much money. Yes, that's exactly how it works. And no family of 4 can survive on that. I can't disclose numbers for job purposes, but look up what it takes to qualify in Ohio and then tell me you support getting rid of those programs, or cutting funding for people like me who have no other option.
End of that rant. I need my iPhone for work purposes and just because I need a little help with medical bills doesn't mean I should have to get rid of it. I bought the phone when I could afford it. Things change. Circumstances change.
And now it's after midnight and I have to work tomorrow. I'm tired. I'm annoyed and I'm emotional. I'm scared to death for Jaxson and I'm worried that I'm not giving Jeffrey enough attention. No Facebook posts for awhile because I just can't. But I'm sure I'll be here more often because of it. Do me a favor: keep your comments on assistance to yourself, regardless of how you feel. I really don't care.
So that brings me to Jaxson. In the last post I noted that he would have a brain MRI, spinal MRI and 3D image of his skull on November 1, followed by his skull repair on November 5. He had an ENT and neonatology appointment this week, followed by an follow up audiology screening. The ENT, by pure dumb luck, is the doctor that's part of the craniofacial team so he would have been following Jaxson anyway. He said that Jaxson has fluid in both ears and will need tubes. All babies with cleft palate's need tubes because their anatomy is incorrect. What I didn't know was that he'll have his first set at six months. Yes, I said first set. He will end up with several sets of tubes because they only last a year to a year and a half. Sure, it's pretty common, but for me it's just something else to add. Jax is supposed to have tubes around the same time as he is supposed to have his spinal surgery. So now I have to figure out how to get everything done and not have him undergo surgery before he's healed from the previous procedure. I'd like to have the tubes before the spinal surgery, so it will just be a matter of coordinating between the two offices. If you have ever had to coordinate anything between two different departments at any hospital, you know how much fun that's going to be!
Jaxson's neonatology visit went okay. The occupational therapist said that he should be seen once a week to ensure his fine motor skills get back on track. He's still behind on a lot of things, but it's all mostly because he was in a hospital bed for 6 weeks. He's definitely moving in the right direction, but there's still some work to do. They also referred him to a low-vision specialist because he's not tracking well with his eyes. I think he can see because he responds to smiles and faces, but I'm not sure how well he sees. They are supposed to call to schedule the appointment, but they haven't yet so I may have to call soon. I would like to have some kind of base test before he has his skull repair to see if his eyes are affected by the surgery. Jax has also been getting pretty sick lately and has been a little constipated too, so the nurse practitioner called neurology to see if they thought it could be due to pressure in his head. Thankfully, they don't think that, so we made some adjustments to his feeding schedule and he actually has not thrown up more than once a day for the last two days. And that's saying something since he was getting sick up to 4 times a day before that, so lets hope it continues!
Those appointments were Monday and Tuesday, respectively, and then on Wednesday he had a follow up hearing screening since the first one was inconclusive. Unfortunately, Jaxson didn't want to stay asleep so we couldn't complete the test. And he had a pretty tough day at neonatology the day before (he got pretty sick) so I didn't want to push it. They're going to try and schedule the screening for November 1 when he has to have anesthesia for his scans. Since he'll already be under, testing his nerves won't be an issue.
With everything getting scheduled and coming together, I'm finally starting to feel everything sink in. I'm tired all the time, no matter how much sleep I get. I'm emotional and sensitive. I mean, I know that this isn't a horribly uncommon surgery, but they're cutting my kids head open. I know that's a pretty carport way to word it, but it's the only way I can get people to kind if picture it and understand why I'm so moody. Today was actually a good day, but the last few days have been really hard. I have no idea how I'm going to handle things when the time comes. I'm going to the doctor tomorrow to discuss options for getting through this. I feel like I mostly have a good handle on everything, but I can feel the pressure coming on and I want to be able to function normally as things continue to happen.
Honestly, I think I would be okay if it was just one thing or another, but the combination of Jaxson's issues combined with money issues and trying to cope with being a working mom and giving Jeffrey the attention he needs is just becoming too much. I love my kids and my family too much to let anything go by the wayside, so I feel that it's time for me to admit that I need help and go get it. And not just financially.
Speaking of money, I am so tired of people posting that stupid meme that says, "if you can afford an iPhone you don't need food stamps". Do your research people. I have an iPhone. Are you telling me that suddenly I have to give it up because I have a medically ill child and my husband can't work? Not to mention that you have to jump through 5000 hoops just to qualify for assistance. I started my application process back in August and I still have nothing to show for it because we have to get letters from Jayson's past employers stating he doesn't work there. And they won't give you anything if you have no income. If you've never been through the process then you have no idea how hard it is to even accept the fact that you need help. And then to see something like that all over the Internet makes you feel even more guilty when it was made by someone completely ignorant of how government assistance programs work. The people who abuse the system are so few and far between its ridiculous. Don't judge just because you think people take the easy way out. It's not actually easy. Don't take away from those of us that need it and pay into it while accepting the help it provides. And this isn't political. It's personal. Here's some food for thought: how much is your annual salary? Now imagine a family of 4, a one income household, living on your salary alone. Not much is it? Now imagine that that family doesn't qualify for assistance because they make too much money. Yes, that's exactly how it works. And no family of 4 can survive on that. I can't disclose numbers for job purposes, but look up what it takes to qualify in Ohio and then tell me you support getting rid of those programs, or cutting funding for people like me who have no other option.
End of that rant. I need my iPhone for work purposes and just because I need a little help with medical bills doesn't mean I should have to get rid of it. I bought the phone when I could afford it. Things change. Circumstances change.
And now it's after midnight and I have to work tomorrow. I'm tired. I'm annoyed and I'm emotional. I'm scared to death for Jaxson and I'm worried that I'm not giving Jeffrey enough attention. No Facebook posts for awhile because I just can't. But I'm sure I'll be here more often because of it. Do me a favor: keep your comments on assistance to yourself, regardless of how you feel. I really don't care.
Saturday, October 13, 2012
Surgery Scheduled
It's bee way too long since my last post, but the lack of sleep around here is killing me. Jaxson is growing like a weed, he weighs close to 11 pounds now! He's only had a few PT and OT visits since my last post, so there's not much to report as far as diagnoses, etc. I will say that he is still slightly behind on his development and where he should be. A lot of that can be attributed to being in the hospital for 6 weeks, some of it may not be. But I'm not overly concerned at this point, there are way too many other things going on to be worried that he's not trying to reach for objects yet. Well, let me rephrase, you can see he's trying, but his low-muscle tone isn't allowing him to do much more than attempt.
So the real reason for this post is to talk about Jaxson's skull surgery. On November 1, Jax will have the 3D image on his head, a brain MRI and a spinal MRI. The 3D image is to make sure there's no additional fusions and nothing new or different from the previous MRI that was completed. Same with the spinal MRI, although that surgery won't happen for a couple of months. The brain MRI was ordered by genetics. One of the reasons that bond fuse together in the skull before they're suppose to is that there's something structurally different about the brain. So this scan will tell them is his brain is normal or not. Don't ask me about the "or not." I chose not to ask what that meant because I don't want to worry about it when it's not necessary. If its a problem, I'll address it then.
Jaxson's first surgery is scheduled for November 5. Scans on the first, surgery on the 5th. It's a 4.5 hour procedure. Thankfully, Sara agreed to watch Jeffrey that day and my parents agreed to have Jeffrey spend the night the night before. I feel very lucky to have a family that will support me while all of that is going on. And especially lucky to have a husband that understands that I will be spending that first night in the hospital. Jax will be in the hospital anywhere from 4-7 days recovering. Now that he's been home, leaving him there is not going to be easy. I haven't slept much in the last few days since I scheduled the surgery, and I don't anticipate sleeping much until this is over. Jaxson is going to have plates and screws in his head, from my understanding of how this works. He'll have another blood transfusion. His eyes will swell shut for a few days. I'm going to be a mess.
I took that entire week off from work, which poses a problem in itself. Thankfully I have an understanding boss, but I've now added more stress to her. See, that's the week before she gets married. So she's taking off Thursday and Friday that week, the other manager is off Tuesday and Wednesday that week because she's working the weekend. So that leaves 4 days where there's only one manager. I'm hoping we can get some help from another branch, but if not I said I would come in during the evening and close the branch if I had to. It's not something I really want to do, but it would help the branch and probably take my mind off of things.
I'm so nervous and scared for this surgery. I know it's more common than most people think, but this is my baby we're talking about. They're going to cut his head open, remove everything that protects his brain, rearrange it, and put it back together. I nearly shed tears every day. I can't eat, I can't sleep. I can't focus on anything. And there's nothing I can do about it. If we don't do the surgery, his brains won't grow the way it's supposed to and we'll have even more problems.
And poor Jeffrey has been such a trooper. He's still wetting the bed sporadically, but his stutter is better, almost gone really. He craves our attention and we try so hard to give it to him, but sometimes Jaxson requires both of us. So most of the time he sits back and quietly entertains himself, but sometimes he's in our faces and other times he is quiet but misbehaving in another room. He's a typical 4 year old boy who loves to play outside and wants to show me how independent he is every day. And thank God he's so well adjusted or we would be in trouble. I am truly blessed to be his mom.
I'll have to cut this short now, my eyes keep dragging shut and I'm attempting to watch Ohio State beat up on Indiana. Please continue to pray for Jaxson. He's got a lot going on and a lot coming up. I need him to be okay!
So the real reason for this post is to talk about Jaxson's skull surgery. On November 1, Jax will have the 3D image on his head, a brain MRI and a spinal MRI. The 3D image is to make sure there's no additional fusions and nothing new or different from the previous MRI that was completed. Same with the spinal MRI, although that surgery won't happen for a couple of months. The brain MRI was ordered by genetics. One of the reasons that bond fuse together in the skull before they're suppose to is that there's something structurally different about the brain. So this scan will tell them is his brain is normal or not. Don't ask me about the "or not." I chose not to ask what that meant because I don't want to worry about it when it's not necessary. If its a problem, I'll address it then.
Jaxson's first surgery is scheduled for November 5. Scans on the first, surgery on the 5th. It's a 4.5 hour procedure. Thankfully, Sara agreed to watch Jeffrey that day and my parents agreed to have Jeffrey spend the night the night before. I feel very lucky to have a family that will support me while all of that is going on. And especially lucky to have a husband that understands that I will be spending that first night in the hospital. Jax will be in the hospital anywhere from 4-7 days recovering. Now that he's been home, leaving him there is not going to be easy. I haven't slept much in the last few days since I scheduled the surgery, and I don't anticipate sleeping much until this is over. Jaxson is going to have plates and screws in his head, from my understanding of how this works. He'll have another blood transfusion. His eyes will swell shut for a few days. I'm going to be a mess.
I took that entire week off from work, which poses a problem in itself. Thankfully I have an understanding boss, but I've now added more stress to her. See, that's the week before she gets married. So she's taking off Thursday and Friday that week, the other manager is off Tuesday and Wednesday that week because she's working the weekend. So that leaves 4 days where there's only one manager. I'm hoping we can get some help from another branch, but if not I said I would come in during the evening and close the branch if I had to. It's not something I really want to do, but it would help the branch and probably take my mind off of things.
I'm so nervous and scared for this surgery. I know it's more common than most people think, but this is my baby we're talking about. They're going to cut his head open, remove everything that protects his brain, rearrange it, and put it back together. I nearly shed tears every day. I can't eat, I can't sleep. I can't focus on anything. And there's nothing I can do about it. If we don't do the surgery, his brains won't grow the way it's supposed to and we'll have even more problems.
And poor Jeffrey has been such a trooper. He's still wetting the bed sporadically, but his stutter is better, almost gone really. He craves our attention and we try so hard to give it to him, but sometimes Jaxson requires both of us. So most of the time he sits back and quietly entertains himself, but sometimes he's in our faces and other times he is quiet but misbehaving in another room. He's a typical 4 year old boy who loves to play outside and wants to show me how independent he is every day. And thank God he's so well adjusted or we would be in trouble. I am truly blessed to be his mom.
I'll have to cut this short now, my eyes keep dragging shut and I'm attempting to watch Ohio State beat up on Indiana. Please continue to pray for Jaxson. He's got a lot going on and a lot coming up. I need him to be okay!
Saturday, September 22, 2012
Checking Off The List
Things with Jaxson have steadily been moving in the right direction. My last post talked about how he was cleared by cardiology for all of his surgeries, and he doesn't have to go back for a year. That news had me elated, and still does really. The biggest concern we had for Jaxson has become a nonissue, and everything else is either fixable or treatable.
Following the cardiology appointment on the 14th, I took him to hematology the following Monday. It was not a good experience. I may actually seek a second opinion. The doctor told me he didn't recommend testing Jax for my disorder. Then looked at me until I asked him why. Jerk. I mean, really? You already know I'm expecting the opposite, so why make me jump through hoops to get the answer? He said that blood doctors are actually shying away from testing kids for the disorder for a variety of reasons, but the one he cited was Jaxson's ability to get life insurance. Excuse me for a second, but are you fucking kidding me? I laughed in his face and asked if he had looked at Jaxson's other issues, and he said that maybe it didn't matter for him. I thought, really? You clearly haven't look at at his records. How are you going to meet with a new patient without looking at his records? I was beyond irritated. So he's going to have these surgeries and no one is going to know if he'll clot too much afterwards. Yeah, I think I'll get a second opinion. He gets a clot in his brain from his skull surgery and I'll sue the crap out of that guy!
Anyway, after that we actually got some more good news! Thursday was a day from hell for me. I got Jaxson to Children's at 8:30 for a kidney ultrasound. Then we went down to nuclear medicine to have a contrast dye scan on his kidneys to see how they are functioning. Then it was up to the urologist for the resutlts. 3.5 hours later, Jax still has some swelling on his right kidney, but it's better than it was a month ago. And his kidneys are functioning fine. So we got to stop the amoxicillin, which is good! He goes back in December for another ultrasound to check on it again, but overall the visit was positive.
Now I'm going to take you back two posts to Jaxson's audiology test. I got the report in the mail last week and it just brought up memories of the visit and how I just didn't have a good feeling about how it went and the way we were treated. So I got in contact with an acquaintance (friend of a friend), who is an audiologist. She read the report and basically reaffirmed my feelings. She recommended that I go to Cincinnati Children's as they have a really good audiology department and apparently this is not something that Columbus Children's is really known for or good at. So we have an ENT appointment on October 15th and I think I'm going to try and schedule a visit to Cincy the week before to have that test repeated.
Jaxson's next appointment is on Wednesday when Franklin County comes out to do their developmental assessment as a referral from Help Me Grow. They'll provide home-based physical therapy, occupational therapy and possibly other therapies as needed. After that (as of right now) he doesn't have any other appointments for two weeks. I'm about 99.9% sure that's going to change, though, as his 3D image on his skull and spinal MRI have not been scheduled. And we'll have to meet with genetics after that. But this week will be relatively easy with just the one appointment and they're coming to the house.
Jaxson seems to be doing very well overall. He weighed 9lbs 11oz when his g tube got changed yesterday. He's been smiling more and awake more, and he's been taking more food from his bottle. We've been able to check off cardiology, hematology and surgery clinic from the list. Urology is no longer a worry, just something to keep tabs on. He seems happy most days, and that's really all that matters!
Jeffrey is still pretty sensitive and wants a lot of attention, but he's getting less whiny and starting to not be so clingy. I'm sure that's partially due to him adjusting to having a brother and partially due to us trying to make sure we give him our undivided attention as often as we can. He still loves going to the clubhouse at the hospital when Jaxson has an appointment, and sometimes he even asks to go there. He cracks me up on a regular basis and shows me every day how smart he is and what an angel we have in our house. I truly could not ask for a better kid to be Jaxson's big brother.
As for Jayson and I, well, we're tired. I get up and go to work 40 hours a week and try to give him as much of a break as I can when he gets home. We alternate nights taking care of Jaxson depending on my schedule. I just hope that Jax starts sleeping through the night soon because I'm not sure how much longer I can function on 3 hours of sleep or less! But really, if that's the only complaint, I think we're doing okay. Oh, there's always money problems and way too many a bills to pay, but I just choose not to think about it. Good or bad, doesn't matter to me right now. It's overwhelming to even consider what we owe, so I'm just crossing my fingers that Jax gets approved for Medicaid and it becomes mostly a nonissue.
Jaxson's ride is still in the beginning stages. I'm trying not to think about how fast his first surgery is sneaking up on me. Most everything has been so positive that I'd rather focus on that. And keeping my family happy and healthy, which is what will keep things normal for the kids. So for now I'll be thankful that there's only one appointment next week and maybe we can get some semblance of normalcy for awhile. That will help everyone relax and distress. Which is exactly what we need.
Following the cardiology appointment on the 14th, I took him to hematology the following Monday. It was not a good experience. I may actually seek a second opinion. The doctor told me he didn't recommend testing Jax for my disorder. Then looked at me until I asked him why. Jerk. I mean, really? You already know I'm expecting the opposite, so why make me jump through hoops to get the answer? He said that blood doctors are actually shying away from testing kids for the disorder for a variety of reasons, but the one he cited was Jaxson's ability to get life insurance. Excuse me for a second, but are you fucking kidding me? I laughed in his face and asked if he had looked at Jaxson's other issues, and he said that maybe it didn't matter for him. I thought, really? You clearly haven't look at at his records. How are you going to meet with a new patient without looking at his records? I was beyond irritated. So he's going to have these surgeries and no one is going to know if he'll clot too much afterwards. Yeah, I think I'll get a second opinion. He gets a clot in his brain from his skull surgery and I'll sue the crap out of that guy!
Anyway, after that we actually got some more good news! Thursday was a day from hell for me. I got Jaxson to Children's at 8:30 for a kidney ultrasound. Then we went down to nuclear medicine to have a contrast dye scan on his kidneys to see how they are functioning. Then it was up to the urologist for the resutlts. 3.5 hours later, Jax still has some swelling on his right kidney, but it's better than it was a month ago. And his kidneys are functioning fine. So we got to stop the amoxicillin, which is good! He goes back in December for another ultrasound to check on it again, but overall the visit was positive.
Now I'm going to take you back two posts to Jaxson's audiology test. I got the report in the mail last week and it just brought up memories of the visit and how I just didn't have a good feeling about how it went and the way we were treated. So I got in contact with an acquaintance (friend of a friend), who is an audiologist. She read the report and basically reaffirmed my feelings. She recommended that I go to Cincinnati Children's as they have a really good audiology department and apparently this is not something that Columbus Children's is really known for or good at. So we have an ENT appointment on October 15th and I think I'm going to try and schedule a visit to Cincy the week before to have that test repeated.
Jaxson's next appointment is on Wednesday when Franklin County comes out to do their developmental assessment as a referral from Help Me Grow. They'll provide home-based physical therapy, occupational therapy and possibly other therapies as needed. After that (as of right now) he doesn't have any other appointments for two weeks. I'm about 99.9% sure that's going to change, though, as his 3D image on his skull and spinal MRI have not been scheduled. And we'll have to meet with genetics after that. But this week will be relatively easy with just the one appointment and they're coming to the house.
Jaxson seems to be doing very well overall. He weighed 9lbs 11oz when his g tube got changed yesterday. He's been smiling more and awake more, and he's been taking more food from his bottle. We've been able to check off cardiology, hematology and surgery clinic from the list. Urology is no longer a worry, just something to keep tabs on. He seems happy most days, and that's really all that matters!
Jeffrey is still pretty sensitive and wants a lot of attention, but he's getting less whiny and starting to not be so clingy. I'm sure that's partially due to him adjusting to having a brother and partially due to us trying to make sure we give him our undivided attention as often as we can. He still loves going to the clubhouse at the hospital when Jaxson has an appointment, and sometimes he even asks to go there. He cracks me up on a regular basis and shows me every day how smart he is and what an angel we have in our house. I truly could not ask for a better kid to be Jaxson's big brother.
As for Jayson and I, well, we're tired. I get up and go to work 40 hours a week and try to give him as much of a break as I can when he gets home. We alternate nights taking care of Jaxson depending on my schedule. I just hope that Jax starts sleeping through the night soon because I'm not sure how much longer I can function on 3 hours of sleep or less! But really, if that's the only complaint, I think we're doing okay. Oh, there's always money problems and way too many a bills to pay, but I just choose not to think about it. Good or bad, doesn't matter to me right now. It's overwhelming to even consider what we owe, so I'm just crossing my fingers that Jax gets approved for Medicaid and it becomes mostly a nonissue.
Jaxson's ride is still in the beginning stages. I'm trying not to think about how fast his first surgery is sneaking up on me. Most everything has been so positive that I'd rather focus on that. And keeping my family happy and healthy, which is what will keep things normal for the kids. So for now I'll be thankful that there's only one appointment next week and maybe we can get some semblance of normalcy for awhile. That will help everyone relax and distress. Which is exactly what we need.
Sunday, September 16, 2012
Good News!
This one is going to be brief, it's been very busy in the Burks household lately. Jaxson had a follow o cardiology appointment on Friday shortly after a follow up neonatology visit. Both visits went really well! Neonatology will follow Jaxson until it's determined that they don't need to anymore. So at least for the first year, possibly two. But he's gaining weight (9 pounds 7.7 ounces!) and growing (21 inches) well. His body is proportionate, which is what they really look for.
Now on to the cardiology visit, which is where the news gets really good: Jaxson does not have to go back to them for a year! They did an EKG and everything sounded and looked good. His pulses are good and even throughout his body. His aorta being small is clearly not impacting anything right now, and the only reason they want to follow up is because his aorta only has too flaps instead of three. As long as things stay as they are, that issue won't likely present itself until Jaxson is iddle aged.
Really great news all around. He's been cleared for surgery, so the next step is to see if he has my clotting disorder. We have a hematology appointment tomorrow to talk about that, and it won't prevent any surgeries, just give the doctors something to be aware of. So we'll be scheduling the 3D image on his skull and spinal MRI this week. His first surgery will take place next month, which is rapidly sneaking up on us. But for now, there's one less worry and one less appointment we have to go to. Check that off the list and move on to the next thing!
Now on to the cardiology visit, which is where the news gets really good: Jaxson does not have to go back to them for a year! They did an EKG and everything sounded and looked good. His pulses are good and even throughout his body. His aorta being small is clearly not impacting anything right now, and the only reason they want to follow up is because his aorta only has too flaps instead of three. As long as things stay as they are, that issue won't likely present itself until Jaxson is iddle aged.
Really great news all around. He's been cleared for surgery, so the next step is to see if he has my clotting disorder. We have a hematology appointment tomorrow to talk about that, and it won't prevent any surgeries, just give the doctors something to be aware of. So we'll be scheduling the 3D image on his skull and spinal MRI this week. His first surgery will take place next month, which is rapidly sneaking up on us. But for now, there's one less worry and one less appointment we have to go to. Check that off the list and move on to the next thing!
Sunday, September 9, 2012
Busy, busy! More Appointments, Updated Timeline
If you can't guess by the lack of posts, things at the Burks household have been quite busy lately. Jaxson has had five appointments since my last post and has three more this week. We met with plastic surgery first, it was just a follow up to the conversation we had in the NICU. Nothing new, but his skull surgery can't be scheduled until he's cleared by cardiology and hematology. In the meantime, I'm waiting to hear about scheduling his spinal MRI and 3D image of his skull in preparation for the surgery.
The next appointment was physical therapy. Jaxson has some muscles that are pretty tight, which is somewhat normal for a baby who's been in the hospital. His third appointment was in conjunction with PT, it was his Help Me Grow assessment. HMG is through the state and they provide home-based PT, occupations therapy, speech therapy, etc. So Jayson learned some stretches to do with Jaxson at PT and he'll go there every other week through our private insurance, and once HMG gets his immunization record, they'll come out to the house about once a month to do additional therapies as needed.
Jaxson's third and fourth appointments were on the same day. The first was the follow up to his G Tube surgery and circumcision. Everything looks great on both counts, healing well. We go back in two weeks to have the G Tube replaced and have the doctor show us how much water to add should the Mickey button come out. The second of those two was his audiology appointment. They wanted to retest his left ear because he showed some signs of hearing loss during his initial test at the hospital. The appointment took 2.5 hours and I was at my wits end by the time it was over. The right ear results were conclusive. While it showed he had some mild hearing loss on the outside, his ear nerve actually registered normal. Which means there's either something structural blocking the sound or there's fluid behind his ear. She did not get to test how well his ear drums were moving because he wouldn't tolerate it, but his right ear should be fine. His left ear tests were inconclusive because he was done with the testing, but it's quite likely that he'll have mild hearing loss in his left ear. From what's understand, it's not common for babies to be born with hearing loss in one ear (go figure), but it's mild and likely fixable with a hearing aid, we'll know more in five weeks. We have to meet with the ENT and repeat the test he just had to get some better results.
This week, Jaxson has a well baby check and immunizations on Tuesday. Then on Friday he'll follow up with neonatology and cardiology. Next Monday he has a hematology appointment, so we should know by the end of next week when his skull surgery will take place. It should happen in the next month.
I wanted to do another timeline on here, as I'm sure I frequently will when things pop up, to catch up people who haven't been following or who can't keep up (not like I really can either!) as things continue to make their way to our calendar. So here it is:
Cardiology and hematology follow up (test for prothrombin gene mutation)
Set ophthalmology appt to check vision and possibility of strabismus
3-4 months - skull surgery
Audiology follow up, if there's a problem, further testing and probably tubes
6-8 months - spinal surgery
10-12 month - cleft surgery
Urology follow up on September 20 to check on blockage, if it's not resolved, surgery
Holes where testicles dropped did not heal at birth like they should have, will require surgery at some point
*before any surgeries take place, he must be cleared by cardiology and hematology
The next 12-18 months are going to be long and full of doctor and hospital visits. But it seems like everything is slowing down (believe it or not) and becoming manageable. Jeffrey's stutter now only appears when he's excited or upset, which is a huge step in the right direction. Jayson and I are becoming more comfortable in our roles in the family and making things work the best they can for us. Jaxson is growing like a weed, he's already 9lbs 2oz! And he sometimes (not often, unfortunately) will sleep for 6 hours at night. But even so, Jayson and I are taking turns and working in shifts on some nights to get through it. I think we have a good schedule worked out and I think that Jax will start sleeping through the night very soon.
For now, we'll just keep doing what we're doing since it seems to be working. And for those times when Jax will only calm down for mommy, there's caffeine to get me through the day. And someday I'll get to share a bed with my husband again. Without a child in between us!
The next appointment was physical therapy. Jaxson has some muscles that are pretty tight, which is somewhat normal for a baby who's been in the hospital. His third appointment was in conjunction with PT, it was his Help Me Grow assessment. HMG is through the state and they provide home-based PT, occupations therapy, speech therapy, etc. So Jayson learned some stretches to do with Jaxson at PT and he'll go there every other week through our private insurance, and once HMG gets his immunization record, they'll come out to the house about once a month to do additional therapies as needed.
Jaxson's third and fourth appointments were on the same day. The first was the follow up to his G Tube surgery and circumcision. Everything looks great on both counts, healing well. We go back in two weeks to have the G Tube replaced and have the doctor show us how much water to add should the Mickey button come out. The second of those two was his audiology appointment. They wanted to retest his left ear because he showed some signs of hearing loss during his initial test at the hospital. The appointment took 2.5 hours and I was at my wits end by the time it was over. The right ear results were conclusive. While it showed he had some mild hearing loss on the outside, his ear nerve actually registered normal. Which means there's either something structural blocking the sound or there's fluid behind his ear. She did not get to test how well his ear drums were moving because he wouldn't tolerate it, but his right ear should be fine. His left ear tests were inconclusive because he was done with the testing, but it's quite likely that he'll have mild hearing loss in his left ear. From what's understand, it's not common for babies to be born with hearing loss in one ear (go figure), but it's mild and likely fixable with a hearing aid, we'll know more in five weeks. We have to meet with the ENT and repeat the test he just had to get some better results.
This week, Jaxson has a well baby check and immunizations on Tuesday. Then on Friday he'll follow up with neonatology and cardiology. Next Monday he has a hematology appointment, so we should know by the end of next week when his skull surgery will take place. It should happen in the next month.
I wanted to do another timeline on here, as I'm sure I frequently will when things pop up, to catch up people who haven't been following or who can't keep up (not like I really can either!) as things continue to make their way to our calendar. So here it is:
Cardiology and hematology follow up (test for prothrombin gene mutation)
Set ophthalmology appt to check vision and possibility of strabismus
3-4 months - skull surgery
Audiology follow up, if there's a problem, further testing and probably tubes
6-8 months - spinal surgery
10-12 month - cleft surgery
Urology follow up on September 20 to check on blockage, if it's not resolved, surgery
Holes where testicles dropped did not heal at birth like they should have, will require surgery at some point
*before any surgeries take place, he must be cleared by cardiology and hematology
The next 12-18 months are going to be long and full of doctor and hospital visits. But it seems like everything is slowing down (believe it or not) and becoming manageable. Jeffrey's stutter now only appears when he's excited or upset, which is a huge step in the right direction. Jayson and I are becoming more comfortable in our roles in the family and making things work the best they can for us. Jaxson is growing like a weed, he's already 9lbs 2oz! And he sometimes (not often, unfortunately) will sleep for 6 hours at night. But even so, Jayson and I are taking turns and working in shifts on some nights to get through it. I think we have a good schedule worked out and I think that Jax will start sleeping through the night very soon.
For now, we'll just keep doing what we're doing since it seems to be working. And for those times when Jax will only calm down for mommy, there's caffeine to get me through the day. And someday I'll get to share a bed with my husband again. Without a child in between us!
Sunday, August 26, 2012
Adjusting to Home Life
Jaxson has been home for a week. And I swear he knows every time I sit down to blog. As soon as I put the iPad on my lap, the kid throws a fit. I've been trying to write this post for five days! So before he pitches a fit again, I'm going to give a short version. I think.
Jayson and Jeffrey seem to be adjusting well to their new routines and roles in the house. Jeffrey is a little more sensitive and needy, but Jayson and I have been trying to give him some special attention here and there and it seems to help. His stutter gets pretty bad when he feels like he's being left out, such as when it takes both Jayson and I to feed Jaxson. But most of the time he acts like a normal three year old and entertains himself. We are lucky to have such an amazing and mostly understanding little boy. He may act like a normal three year old most days, but other days you can tell he was given to us for a reason. Not many kids could handle what he's had to and will have to endure. But I do t worry about Jeffrey. He's always adjusted well and I don't anticipate this being any different. And I know he'll grow up protecting his little brother and doting over him all through this process. We are truly blessed to have him as our son.
Jayson is handling staying at home like a champ. Jaxson's bottles and feeding equipment are always clean, the kitchen is always clean, the laundry gets done and there's usually dinner when I get home from work. I'm so lucky to have a partner who is comfortable enough in his own skin to take part in such a role reversal. It's been a tough week on both of us because of that, but everyone is figuring out their respective routines. Jayson is an amazing father and husband. Sure, he gets frustrated, as we all do, but he's also shown mad patience in times when I would pull my hair out. I admire his ability to keep his cool 97% of the time.
Jaxson seems to be adjusting okay. Today we decided to change a few things around. We upped his feeds yesterday and the poor thing didn't sleep a wink last night. Which meant that mom didn't sleep either. And I now it's because his belly hurt. So today we decided to let him dictate when he eats instead of continuing on this rigid schedule. I know he's been on this schedule for 7 weeks, but with the continuous drip in his tube at night it's just not working. We're going to cut out the drip and feed him like a regular baby. Even if we don't give him a bottle at night and put his food right in his tube, at least he'll get fed and calmed down much faster than he has been. I believe that he's not sleeping cease even though he's got the pump, he's still hungry. Has body doesn't understand the switch from his daytime schedule to his nighttime schedule. So we are going to try this and see if he does better. And hopefully in the process Jayson and I will get more sleep.
And then there's me. I got to spend a whopping 48 hours with my family together last weekend before returning to work on Monday. I worked a full week and took m turns with Jaxson when I had a later shift at work the next day. I'm exhausted. My back hurts. But my baby is home. It's worth it. Adjusting to being the sole breadwinner is a little rough. I want to be home with my family. But someone has to work, and for us that person is me. Thankfully Jayson can still tattoo to supplement my income, but I still have to have a regular job. Some days it's nice to go to work and get a break from the kids, but most days I just miss everyone all day. I know I will get used to it as time goes on, but for now it's a little rough.
The last two days have been really nice though. I've gotten to spend some quality time with my family and really see what Jayson does all day. I try to help him when I'm home and he yells at me to sit down. Like I don't sit down all day at work! But I appreciate that he recognizes that I'm tired when I get home, and this weekend has been nice just relaxing.
Now that we've got our routines, I think that everyone is going to begin adjusting even more. Jaxson's appointments (he's already had 2) will throw certain days off, but I've been lucky enough to be able to schedule most of my days around them to help out with Jeffrey. Well that and I want to be there too. Last week Jaxson gained 4 ounces in 2 days! I can't wait to see what he weighs when the nurse comes out on Wednesday. Thursday marks his first of 9 days of appointments over the next 3 weeks. Notice I said 9 days, not 9 appointments. Some of those days have multiple appointments. Thursday we meet with Dr. Pearson of plastic surgery to discuss the skull surgery and probably set up the appointment for the 3D image of his skull as well as his brain and spine MRIs. More appointments to add the list.
And so Jaxson's journey through life truly begins. He's home. And he's got a long road ahead of him. It's time to settle in and take all of this in and see what it really means and how it's not only going to affect Jaxson, but the rest of us. Jaxson is a fighter and he's already proven that his will to get through these first rough patches will supersede anything that's thrown at him. He's going to be mentally and emotionally tougher than any other kid his age. He may not get to be physically stronger or allowed to play sports like his brother, but he'll make up for it in other ways. And who knows, he might surprise us and be a fantastic sportsman. His little body has already endured so much that I don't doubt his ability to prove everyone wrong when he wants to.
This journey is truly going to be the ride of a lifetime. As draining as it has been and will be in the future, I wouldn't have it any other way.
Jayson and Jeffrey seem to be adjusting well to their new routines and roles in the house. Jeffrey is a little more sensitive and needy, but Jayson and I have been trying to give him some special attention here and there and it seems to help. His stutter gets pretty bad when he feels like he's being left out, such as when it takes both Jayson and I to feed Jaxson. But most of the time he acts like a normal three year old and entertains himself. We are lucky to have such an amazing and mostly understanding little boy. He may act like a normal three year old most days, but other days you can tell he was given to us for a reason. Not many kids could handle what he's had to and will have to endure. But I do t worry about Jeffrey. He's always adjusted well and I don't anticipate this being any different. And I know he'll grow up protecting his little brother and doting over him all through this process. We are truly blessed to have him as our son.
Jayson is handling staying at home like a champ. Jaxson's bottles and feeding equipment are always clean, the kitchen is always clean, the laundry gets done and there's usually dinner when I get home from work. I'm so lucky to have a partner who is comfortable enough in his own skin to take part in such a role reversal. It's been a tough week on both of us because of that, but everyone is figuring out their respective routines. Jayson is an amazing father and husband. Sure, he gets frustrated, as we all do, but he's also shown mad patience in times when I would pull my hair out. I admire his ability to keep his cool 97% of the time.
Jaxson seems to be adjusting okay. Today we decided to change a few things around. We upped his feeds yesterday and the poor thing didn't sleep a wink last night. Which meant that mom didn't sleep either. And I now it's because his belly hurt. So today we decided to let him dictate when he eats instead of continuing on this rigid schedule. I know he's been on this schedule for 7 weeks, but with the continuous drip in his tube at night it's just not working. We're going to cut out the drip and feed him like a regular baby. Even if we don't give him a bottle at night and put his food right in his tube, at least he'll get fed and calmed down much faster than he has been. I believe that he's not sleeping cease even though he's got the pump, he's still hungry. Has body doesn't understand the switch from his daytime schedule to his nighttime schedule. So we are going to try this and see if he does better. And hopefully in the process Jayson and I will get more sleep.
And then there's me. I got to spend a whopping 48 hours with my family together last weekend before returning to work on Monday. I worked a full week and took m turns with Jaxson when I had a later shift at work the next day. I'm exhausted. My back hurts. But my baby is home. It's worth it. Adjusting to being the sole breadwinner is a little rough. I want to be home with my family. But someone has to work, and for us that person is me. Thankfully Jayson can still tattoo to supplement my income, but I still have to have a regular job. Some days it's nice to go to work and get a break from the kids, but most days I just miss everyone all day. I know I will get used to it as time goes on, but for now it's a little rough.
The last two days have been really nice though. I've gotten to spend some quality time with my family and really see what Jayson does all day. I try to help him when I'm home and he yells at me to sit down. Like I don't sit down all day at work! But I appreciate that he recognizes that I'm tired when I get home, and this weekend has been nice just relaxing.
Now that we've got our routines, I think that everyone is going to begin adjusting even more. Jaxson's appointments (he's already had 2) will throw certain days off, but I've been lucky enough to be able to schedule most of my days around them to help out with Jeffrey. Well that and I want to be there too. Last week Jaxson gained 4 ounces in 2 days! I can't wait to see what he weighs when the nurse comes out on Wednesday. Thursday marks his first of 9 days of appointments over the next 3 weeks. Notice I said 9 days, not 9 appointments. Some of those days have multiple appointments. Thursday we meet with Dr. Pearson of plastic surgery to discuss the skull surgery and probably set up the appointment for the 3D image of his skull as well as his brain and spine MRIs. More appointments to add the list.
And so Jaxson's journey through life truly begins. He's home. And he's got a long road ahead of him. It's time to settle in and take all of this in and see what it really means and how it's not only going to affect Jaxson, but the rest of us. Jaxson is a fighter and he's already proven that his will to get through these first rough patches will supersede anything that's thrown at him. He's going to be mentally and emotionally tougher than any other kid his age. He may not get to be physically stronger or allowed to play sports like his brother, but he'll make up for it in other ways. And who knows, he might surprise us and be a fantastic sportsman. His little body has already endured so much that I don't doubt his ability to prove everyone wrong when he wants to.
This journey is truly going to be the ride of a lifetime. As draining as it has been and will be in the future, I wouldn't have it any other way.
Saturday, August 18, 2012
Jaxson Comes Home
There hasn't been a whole lot to update you on over the last few days. It's mostly been Jaxson getting back on a regular eating schedule and me adjusting to going back to work. Nothing major to report, which is nice!
Today, though, is a different story. I write to you from the hospital today as Jaxson does his 90 minute carseat test. Jayson took Jeffrey to the park for a few after picking up Jaxson's prescriptions at the pharmacy. The nurses got all of our stuff together in bags between last night and this morning, and the nurse today is working on scanning out every bottle of milk I have here. There are seven bins! It looks like we're going to have to use it up before we need to buy formula. We don't have enough space in our freezer for all of it! Guess I produced more than I thought.
After Jaxson's carseat test, we've got to feed him and then we get to go home! I'm feeling slightly overwhelmed. We have a place for him to sleep and a few outfits, but not much else. We just didn't know how to plan for this little guy and now I feel like we're scrambling to get what we need. The carseat he's in isn't even ours. It's Ariella's and we have to give it back.
And then there's the matter of integrating this little guy into our daily home routines. I don't really see it being a problem, it's just an adjustment because he's home and not at the hospital. We've spent the last six and a half weeks driving back and forth and now everyone is finally going to be under one roof. I'm really excited about it, just nervous! Jaxson will have is own adjustment period as he sees what the real world is like. I mean, this kid has never been outside except to be transferred from Riverside to Children's! So he's going to have his own adjustment period too.
This is definitely a good thing. Babies are supposed to be home with their families. And I know that once we get there everything is going to work out fine. It's the anticipation of getting him there that's making me a wreck. Crossies all goes well so I can be comfortable going back to work on Monday!
Today, though, is a different story. I write to you from the hospital today as Jaxson does his 90 minute carseat test. Jayson took Jeffrey to the park for a few after picking up Jaxson's prescriptions at the pharmacy. The nurses got all of our stuff together in bags between last night and this morning, and the nurse today is working on scanning out every bottle of milk I have here. There are seven bins! It looks like we're going to have to use it up before we need to buy formula. We don't have enough space in our freezer for all of it! Guess I produced more than I thought.
After Jaxson's carseat test, we've got to feed him and then we get to go home! I'm feeling slightly overwhelmed. We have a place for him to sleep and a few outfits, but not much else. We just didn't know how to plan for this little guy and now I feel like we're scrambling to get what we need. The carseat he's in isn't even ours. It's Ariella's and we have to give it back.
And then there's the matter of integrating this little guy into our daily home routines. I don't really see it being a problem, it's just an adjustment because he's home and not at the hospital. We've spent the last six and a half weeks driving back and forth and now everyone is finally going to be under one roof. I'm really excited about it, just nervous! Jaxson will have is own adjustment period as he sees what the real world is like. I mean, this kid has never been outside except to be transferred from Riverside to Children's! So he's going to have his own adjustment period too.
This is definitely a good thing. Babies are supposed to be home with their families. And I know that once we get there everything is going to work out fine. It's the anticipation of getting him there that's making me a wreck. Crossies all goes well so I can be comfortable going back to work on Monday!
Tuesday, August 14, 2012
G-Tube Placement
I can't believe it's been four days since my last post. I wanted to get something up last night, but I just didn't have it. I fell asleep in the five minutes it took for Jayson to put Jeffrey to bed last night. I can't remember if I posted this yet, but Sara came home on Saturday. We are all excited to have her back where she belongs, especially her daughters. She's not completely out of the woods yet, but she's at least stable enough to be home while they try to figure out what's ultimately causing her problems. It's been nice to have her home and have her be available when I actually get a minute to call her!
So, if you didn't catch it on Facebook yesterday, Jaxson had his feeding tube put in yesterday. I got to the hospital around 7:30am to see him and hang out before everything got started. He was a add-on, so we had no idea when he would be taken back. I was really hoping that everything would get going before I had to go to work, and thankfully it did. Also thankfully, Jayson had Jeffrey up and ready pretty early. Sam was more than willing to watch Jeffrey during all of this and take him to my dads as well, so when I called Jayson to let him know, he was already dropping Jeffrey off. From there, Amanda was nice enough to pick Jeffrey up as there was a small glitch in our plans, and she was nice enough to grab him on short notice. Then Jayson picked him up from her later. I love my friends and family!
So, we got the call shortly before 9am. They got Jaxson switched to a different bed that would help regulate his temperature during and after surgery and then we were off to the OR waiting room. I talked with anesthesia before Jayson got there, but he arrived in time to talk to the doctor before surgery. We were able to smother Jaxson with kisses and walk with him down to the OR before we went to the family waiting room. On the walk down, I had to fight the urge to burst into tears. I got us checked in and got Jaxsons's tracking number to follow his progress on the monitor. Each kid is assigned a number and a list is shown on the screen so you a see what part of the process your child is in. You can see when everything is done and be ready for them to come get you before your name is actually called. I didn't get to see much of that because I was in that room for all of five minutes. I had to pump and then go to work.
Leaving the hospital while Jaxson was in surgery was possibly the hardest thing I have ever done. But it was probably the best decision I could have made. Jayson was there to talk to the doctors afterward and there was nothing I could do during the procedure. It was good for me to return to work and be distracted during that time. Jayson said that Jaxson was so out of it after the surgery that I didn't miss anything anyway. Of course, I would have held him, but I have other responsibilities too and I needed to make sure I took care of everything.
Jaxson came through the surgery really well. He has lots of new hardware attached to him that is really scary to look at right now, but I know it's for the best. We were able to get him circumcised at the same time, which was nice for a couple of reasons. One, the nurses can take care of it for most of the healing process. Two, he was already sedated so we didn't have to put him through it twice.
There was one negative that came out of the surgery. The doctor who did the surgery apparently makes it a practice to look at the pelvic area when she does feeding tubes. It's laparoscopic, so nothing too crazy. She discovered that the area where Jaxson's testicles dropped from did not close and heal up as they should have. It's really common in premature babies, and it hasn't caused him any issues yet, but it will make him more prone to hernias. And it WILL have to be fixed at some point. We'll find out more about what that really means in a month when we go in for the follow-up appointment and his first G-Tube change.
It's really hard to go see Jaxson while he heals up from this. He is on a continuous drip through his tube. First it was just Pedialyte to make sure everything was okay and that he could tolerate it. He was switched back to food today and they will monitor how he handles that before moving him back to regular feeds. But while he's on the continuous drip he can't be picked up. So all I could do was lean over and give him kisses. And when I did that he would fuss. He's still on morphine and Tylenol every four hours too, so he's pretty out of it.
I am so ready for him to come home that I can't stand it. But I want to cry seeing that tube in his belly and now I question whether it was the right decision. I know deep down that it was, but it's so hard to see now. I hate it for him. I hate that he's in pain. I hate that he can't be comforted by me because I can't pick him up. I hate that I probably won't get to see him tomorrow.
It's like I get more depressed each day, but I shouldn't because I know he's coming home next week. Jayson and I are going to training classes on Friday to learn how to take are of Jaxson's tube and how to replace it if it comes out. Maybe I'm just depressed that we even have to do this. The more I think about how unfair this is, the more I have to remind myself that we can do it. We were blessed with an amazing little boy in Jeffrey. He's not only going to be a great big brother, but I already know he's got the personality and character to handle growing up with a little less attention than Jaxson. Keeping it equal is a huge goal of mine, but there will just be times that Jaxson needs more. And I firmly believe that Jeffrey will grow up knowing that he's just as special as his brother, even if mo and dad can't always show him. Jayson and I have a strong enough foundation to handle Jaxon and his medical problems without it tearing us apart. There are so many people I hear about whose relationships aren't strong enough to withstand this situation. Ours isn't one of them. How many men do you know that are comfortable enough in their own skin to be a stay-at-home dad and let their wife go to work? It's a complete role reversal and not many men could handle it. I'm blessed to be married to a man that is not just able, but -willing- to stay home with the kids.
So I'm hoping that these times of depression get fewer and farther between. I'm hoping that fence Jaxson comes home that things will start to look up and that my feelings are caused by my dissing him more than anything. I guess we'll find out next week. For now, I'll just keep counting the blessings that I have in my three amazing boys. I hope that Jaxson continues to teach me something every day and I'm grateful that Jeffrey is perfect and Jayson supports me in everything I do.
I truly am blessed, even if sometimes it's hard to see beyond the struggles.
So, if you didn't catch it on Facebook yesterday, Jaxson had his feeding tube put in yesterday. I got to the hospital around 7:30am to see him and hang out before everything got started. He was a add-on, so we had no idea when he would be taken back. I was really hoping that everything would get going before I had to go to work, and thankfully it did. Also thankfully, Jayson had Jeffrey up and ready pretty early. Sam was more than willing to watch Jeffrey during all of this and take him to my dads as well, so when I called Jayson to let him know, he was already dropping Jeffrey off. From there, Amanda was nice enough to pick Jeffrey up as there was a small glitch in our plans, and she was nice enough to grab him on short notice. Then Jayson picked him up from her later. I love my friends and family!
So, we got the call shortly before 9am. They got Jaxson switched to a different bed that would help regulate his temperature during and after surgery and then we were off to the OR waiting room. I talked with anesthesia before Jayson got there, but he arrived in time to talk to the doctor before surgery. We were able to smother Jaxson with kisses and walk with him down to the OR before we went to the family waiting room. On the walk down, I had to fight the urge to burst into tears. I got us checked in and got Jaxsons's tracking number to follow his progress on the monitor. Each kid is assigned a number and a list is shown on the screen so you a see what part of the process your child is in. You can see when everything is done and be ready for them to come get you before your name is actually called. I didn't get to see much of that because I was in that room for all of five minutes. I had to pump and then go to work.
Leaving the hospital while Jaxson was in surgery was possibly the hardest thing I have ever done. But it was probably the best decision I could have made. Jayson was there to talk to the doctors afterward and there was nothing I could do during the procedure. It was good for me to return to work and be distracted during that time. Jayson said that Jaxson was so out of it after the surgery that I didn't miss anything anyway. Of course, I would have held him, but I have other responsibilities too and I needed to make sure I took care of everything.
Jaxson came through the surgery really well. He has lots of new hardware attached to him that is really scary to look at right now, but I know it's for the best. We were able to get him circumcised at the same time, which was nice for a couple of reasons. One, the nurses can take care of it for most of the healing process. Two, he was already sedated so we didn't have to put him through it twice.
There was one negative that came out of the surgery. The doctor who did the surgery apparently makes it a practice to look at the pelvic area when she does feeding tubes. It's laparoscopic, so nothing too crazy. She discovered that the area where Jaxson's testicles dropped from did not close and heal up as they should have. It's really common in premature babies, and it hasn't caused him any issues yet, but it will make him more prone to hernias. And it WILL have to be fixed at some point. We'll find out more about what that really means in a month when we go in for the follow-up appointment and his first G-Tube change.
It's really hard to go see Jaxson while he heals up from this. He is on a continuous drip through his tube. First it was just Pedialyte to make sure everything was okay and that he could tolerate it. He was switched back to food today and they will monitor how he handles that before moving him back to regular feeds. But while he's on the continuous drip he can't be picked up. So all I could do was lean over and give him kisses. And when I did that he would fuss. He's still on morphine and Tylenol every four hours too, so he's pretty out of it.
I am so ready for him to come home that I can't stand it. But I want to cry seeing that tube in his belly and now I question whether it was the right decision. I know deep down that it was, but it's so hard to see now. I hate it for him. I hate that he's in pain. I hate that he can't be comforted by me because I can't pick him up. I hate that I probably won't get to see him tomorrow.
It's like I get more depressed each day, but I shouldn't because I know he's coming home next week. Jayson and I are going to training classes on Friday to learn how to take are of Jaxson's tube and how to replace it if it comes out. Maybe I'm just depressed that we even have to do this. The more I think about how unfair this is, the more I have to remind myself that we can do it. We were blessed with an amazing little boy in Jeffrey. He's not only going to be a great big brother, but I already know he's got the personality and character to handle growing up with a little less attention than Jaxson. Keeping it equal is a huge goal of mine, but there will just be times that Jaxson needs more. And I firmly believe that Jeffrey will grow up knowing that he's just as special as his brother, even if mo and dad can't always show him. Jayson and I have a strong enough foundation to handle Jaxon and his medical problems without it tearing us apart. There are so many people I hear about whose relationships aren't strong enough to withstand this situation. Ours isn't one of them. How many men do you know that are comfortable enough in their own skin to be a stay-at-home dad and let their wife go to work? It's a complete role reversal and not many men could handle it. I'm blessed to be married to a man that is not just able, but -willing- to stay home with the kids.
So I'm hoping that these times of depression get fewer and farther between. I'm hoping that fence Jaxson comes home that things will start to look up and that my feelings are caused by my dissing him more than anything. I guess we'll find out next week. For now, I'll just keep counting the blessings that I have in my three amazing boys. I hope that Jaxson continues to teach me something every day and I'm grateful that Jeffrey is perfect and Jayson supports me in everything I do.
I truly am blessed, even if sometimes it's hard to see beyond the struggles.
Friday, August 10, 2012
G-Tube Decision
If you follow me on Facebook, then you already know that Jayson and I made the decision today to go ahead and have the doctors schedule Jaxson's G-tube surgery. He is improving on his feeds, and we will continue to work on it at home, but he's not improving fast enough for us to give him another week at the hospital to try it. We don't have a date for the surgery yet, but it will likely be Monday or Tuesday.
In preparation for the G-tube placement, Jaxson had to have a contras scan to make sure that his anatomy is correct. Meaning, they had to know that his stomach was in the right place! I wasn't really worried, if it was not in the right spot then his NG tube wouldn't be working. And I was right, everything looked good on the scan.
Of course, the day that I tell them we want to move forward with the tube so that he can come home, he starts eating better. He at 43mL at 8am, they made me stop at 10mL at 11 because of the scan, but he ate a full bottle (60mL) at 2! Then 35mL and 23mL tonight. It's like he knows what's coming. And you know what? If that motivates him then all the better! I can back out of that surgery at any time before they do it. So if he decides that he suddenly wants to take off and eat like he's supposed to, then we'll wait and let him do it. He's going to be at the hospital for another 10 days most likely anyway, so if it's not going to extend that time and he comes home without a tube, then I'll take it! I'm really not holding my breath though. We'll do the tube and if he gets it back out in a month then that's what happens. But I want him to progress at his pace, not be forced into it before he's ready.
On the subject of food, I've been attempting to wean myself off of pumping as I return to work next week. I've chatted with other moms and struggled with my own demons. Initially I felt that I wouldn't be able to take the time at work to do it. It was my decision to stop, no one was forcing me. But as I've started this process I'm beginning to question myself. I want to give Jaxson everything that I can. I won't be able to be home with him during the day, and I feel that if I can produce for him then I should. No one is pushing me in that direction either. Even the lactation consultants have been really understanding in working with me on what's best for my family. So all of this back and forth is in my head. I got some good tips on how to slow down my production, but part of me doesn't want to do that. If I can just back off slowly then maybe I'll feel better. I've already gotten myself to every 4-5 hours without a problem, so I'd only have to pump once during a shift. I tried 6 hours today and thought I was going to die by the time I pumped again.
So I'm trying to figure out what the best course of action is, even though I think I've already made up my mind. And maybe once Jaxson comes home I'll feel differently about what I can do for him, but for now I think I need to keep doing what I'm doing. It's exhausting, and it's going to be a pain to cart my pump around and make sure that I have access to a plug o a regular basis. But I think it will be far more wearing on me to NOT pump and provide for my baby. Not to mention the emotional toll that stopping pumping takes on a woman's body anyway.
If you're still reading this, thanks for letting me process my thoughts and feelings as I write. If you haven't noticed, that's how I function best.
Jaxson is finally on pace to come home and I can't wait until he gets here. He's going to have a long list of appointments with virtually every department at the hospital, but he'll be home. I'll be able to see him and touch him and take care of him without driving 20 minutes to do it. He can sleep in my bed, or at least in my room, and be surrounded by love 24/7. I just know that he'll improve and progress so much faster when he's in a regular environment that allows him to grow and thrive like a normal baby.
I just can't believe how far this little boy has come and how much I miss him every day. It's funny, I was so worried that I wouldn't be able to love Jaxson as much as I love Jeffrey. Jeffrey is such a cool little kid and so perfect in so many ways. There's something about your first that nothing else compares to. But Jaxson found a way. He wasn't going to let his big brother have all of my love, he managed to find enough room in my heart to get the same amount of love that Jeffrey gets. I honestly didn't think it was possible, and I never believed my mom when she said she loved us all the same. But now I get it. I couldn't ask for better kids and I can't wait to show Jaxson what it's like to be around love all the time. He's a special baby and deserves everything we can give him. Even if he ends up with a few scars from a G-tube that gets him in the place he belongs earlier than if we didn't do it.
My nerves are pretty shot at this point. This was a big decision and I won't be able to be there for his surgery next week as I'll be back a work. But Jayson can be there. And I can call as often as I want. Is the right decision. I know it is.
In preparation for the G-tube placement, Jaxson had to have a contras scan to make sure that his anatomy is correct. Meaning, they had to know that his stomach was in the right place! I wasn't really worried, if it was not in the right spot then his NG tube wouldn't be working. And I was right, everything looked good on the scan.
Of course, the day that I tell them we want to move forward with the tube so that he can come home, he starts eating better. He at 43mL at 8am, they made me stop at 10mL at 11 because of the scan, but he ate a full bottle (60mL) at 2! Then 35mL and 23mL tonight. It's like he knows what's coming. And you know what? If that motivates him then all the better! I can back out of that surgery at any time before they do it. So if he decides that he suddenly wants to take off and eat like he's supposed to, then we'll wait and let him do it. He's going to be at the hospital for another 10 days most likely anyway, so if it's not going to extend that time and he comes home without a tube, then I'll take it! I'm really not holding my breath though. We'll do the tube and if he gets it back out in a month then that's what happens. But I want him to progress at his pace, not be forced into it before he's ready.
On the subject of food, I've been attempting to wean myself off of pumping as I return to work next week. I've chatted with other moms and struggled with my own demons. Initially I felt that I wouldn't be able to take the time at work to do it. It was my decision to stop, no one was forcing me. But as I've started this process I'm beginning to question myself. I want to give Jaxson everything that I can. I won't be able to be home with him during the day, and I feel that if I can produce for him then I should. No one is pushing me in that direction either. Even the lactation consultants have been really understanding in working with me on what's best for my family. So all of this back and forth is in my head. I got some good tips on how to slow down my production, but part of me doesn't want to do that. If I can just back off slowly then maybe I'll feel better. I've already gotten myself to every 4-5 hours without a problem, so I'd only have to pump once during a shift. I tried 6 hours today and thought I was going to die by the time I pumped again.
So I'm trying to figure out what the best course of action is, even though I think I've already made up my mind. And maybe once Jaxson comes home I'll feel differently about what I can do for him, but for now I think I need to keep doing what I'm doing. It's exhausting, and it's going to be a pain to cart my pump around and make sure that I have access to a plug o a regular basis. But I think it will be far more wearing on me to NOT pump and provide for my baby. Not to mention the emotional toll that stopping pumping takes on a woman's body anyway.
If you're still reading this, thanks for letting me process my thoughts and feelings as I write. If you haven't noticed, that's how I function best.
Jaxson is finally on pace to come home and I can't wait until he gets here. He's going to have a long list of appointments with virtually every department at the hospital, but he'll be home. I'll be able to see him and touch him and take care of him without driving 20 minutes to do it. He can sleep in my bed, or at least in my room, and be surrounded by love 24/7. I just know that he'll improve and progress so much faster when he's in a regular environment that allows him to grow and thrive like a normal baby.
I just can't believe how far this little boy has come and how much I miss him every day. It's funny, I was so worried that I wouldn't be able to love Jaxson as much as I love Jeffrey. Jeffrey is such a cool little kid and so perfect in so many ways. There's something about your first that nothing else compares to. But Jaxson found a way. He wasn't going to let his big brother have all of my love, he managed to find enough room in my heart to get the same amount of love that Jeffrey gets. I honestly didn't think it was possible, and I never believed my mom when she said she loved us all the same. But now I get it. I couldn't ask for better kids and I can't wait to show Jaxson what it's like to be around love all the time. He's a special baby and deserves everything we can give him. Even if he ends up with a few scars from a G-tube that gets him in the place he belongs earlier than if we didn't do it.
My nerves are pretty shot at this point. This was a big decision and I won't be able to be there for his surgery next week as I'll be back a work. But Jayson can be there. And I can call as often as I want. Is the right decision. I know it is.
Thursday, August 9, 2012
Another Bump in the Road
So, this post will actually be about Jaxson! Julie has been transferred to a rehab facility and is slowly regaining her strength. Sara has been moved from ICU to the step-down unit as her numbers are finally where they should be. I've been as focused on Jaxson as I can be, but now I get to write about him again.
Jaxson is fully recovered from his infections and had his PICC line removed over the weekend. He had to get another IV on Tuesday because urology wanted an additional test before we started him on an antibiotic. It was a contrast renal scan that showed how his kidneys are functioning. Initially, and this is how it's reflected in his records, the ultrasound showed that Jaxson has two ureters on his left kidney. They call it a duplicated system. However, when I talked to urology this morning, I was left with the impression that the duplicated system is actually on the right. I need to get further clarification on this to see what the actual deal is, but right now it's not a huge concern. The scan showed that Jaxson's right kidney has low or no functionality on the lower right pole. That could mean there's just some fluid in the kidney or there could be a blockage.
It sounds scarier than it is. Urology says it's common for a duplicated system to have low functionality of some kind. Basically they will do another scan in a month to see how it's doing. If it is resolving itself, they don't do anything and will check back after three more months. If it has not resolved itself then they will discuss a plan to correct it. Which will likely involve surgery. But I'm not stressing about it now because there's a good chance that it will fix itself and this will be a nonissue. If it's another surgery then so be it. But I can't even think about it right now. Right now I just want to get this kid home.
We also got word that genetics wants to do further testing for more rare causes for Jaxson's issues. I'm not surprised. I was surprised when they said they weren't doing testing, so it wasn't a shock when they changed their minds. I'm not sure what all they're looking for, but if anything comes back positive I'll deal with it then. It's just another "what if" scenario I don't want to deal with unless I have to. So I'll keep you posted as I hear more and learn about whatever they find.
So now we have to work on getting Jaxson home. Tomorrow, Jayson and I will make the final decision to have a G-tube put in Jaxson's stomach. I'm sure that we'll decide to have it done because the ony thing keening Jaxson in the hospital is his ability to eat. Because of his cleft and other birth defects, he may never gain the ability to eat a full bottle by mouth. He can't live at the hospital, so while this isn't ideal, it is what it is. When we tell them the decision tomorrow, they'll get the surgery scheduled for next week and he'll be able to come home the week after. I cannot wait to walk out of that hospital knowing that the next time I come back it will be for an outpatient visit!
We're getting closer and closer to things being "normal". Or, rather, what normal is going to be for us from here on out. The social worker came to talk to me today too. She told me about some programs that we'll qualify for because of Jaxson's medical issues and she's going to hook me up with the rep they have at the hospital so I don't have to deal with regular state run offices. Jaxson can't go to daycare for a variety of reasons, but the one that qualifies him for assistance is the G-tube. I don't know of a single daycare that would accept a child with a tube in his belly. Too much liability. Please do not misunderstand. Jaxson should be taking 150mL by mouth every day. On average, he takes between 30 and 50. So the tube is not a ploy to qualify for government assistance, it is a legitimate need in order for him to come home and learn how to function in the real world.
Physical therapy also came by today. I guess we had a busy day! Jaxson will be fully evaluated tomorrow and a plan will be set to help him learn to use his muscles. I don't think I've mentioned before that he has low muscle tone, but he does. I was given some stretches to do with him and activities to do with him over the next few months to help him develop and grow.
Every single person I've come into contact with at Children's has been amazing. We've had a few nurses that weren't my favorite, but they are few and far between. I feel that we have been so blessed to be where we are and live so close to such an awesome place. I truly feel that Jaxson is getting the best care possible and that he's going to have an excellent plan in place when he leaves. I couldn't ask for more. These people are not only good at what they do, but they genuinely care about these babies and are devoted to delivering quality care while communicating every step with parents.
You know, a lot of people tell me this isn't fair and wonder why all of this is happening to my baby. Sure, I went through that. But now that I've come to terms with how Jaxson's life is going to go, and maybe "come to terms" isn't the right wording, but I get it. This isn't "happening" to my baby or me. Jaxson is a gift. He's taught me more about life in the last month than I have learned in 30 years. He's taught me patience (don't laugh haha!), he's taught me what it looks like to fight and keep on going when it would be so much easier to give up. He's taught me what true strength is and how much of my own strength I have and how to use it. He's taught me how to feel my feelings and understand my emotions, something my logical brain just couldn't comprehend before now. He's teaching me ow to be a better person and a better mom. I am nothing if not blessed by that perfect little boy who has endured so much already.
The road ahead is going to be long and it's going to be bumpy. But I have the best people in the world at my side to travel that road with me. As long as I have them and they have me, everything will be just fine.
Jaxson is fully recovered from his infections and had his PICC line removed over the weekend. He had to get another IV on Tuesday because urology wanted an additional test before we started him on an antibiotic. It was a contrast renal scan that showed how his kidneys are functioning. Initially, and this is how it's reflected in his records, the ultrasound showed that Jaxson has two ureters on his left kidney. They call it a duplicated system. However, when I talked to urology this morning, I was left with the impression that the duplicated system is actually on the right. I need to get further clarification on this to see what the actual deal is, but right now it's not a huge concern. The scan showed that Jaxson's right kidney has low or no functionality on the lower right pole. That could mean there's just some fluid in the kidney or there could be a blockage.
It sounds scarier than it is. Urology says it's common for a duplicated system to have low functionality of some kind. Basically they will do another scan in a month to see how it's doing. If it is resolving itself, they don't do anything and will check back after three more months. If it has not resolved itself then they will discuss a plan to correct it. Which will likely involve surgery. But I'm not stressing about it now because there's a good chance that it will fix itself and this will be a nonissue. If it's another surgery then so be it. But I can't even think about it right now. Right now I just want to get this kid home.
We also got word that genetics wants to do further testing for more rare causes for Jaxson's issues. I'm not surprised. I was surprised when they said they weren't doing testing, so it wasn't a shock when they changed their minds. I'm not sure what all they're looking for, but if anything comes back positive I'll deal with it then. It's just another "what if" scenario I don't want to deal with unless I have to. So I'll keep you posted as I hear more and learn about whatever they find.
So now we have to work on getting Jaxson home. Tomorrow, Jayson and I will make the final decision to have a G-tube put in Jaxson's stomach. I'm sure that we'll decide to have it done because the ony thing keening Jaxson in the hospital is his ability to eat. Because of his cleft and other birth defects, he may never gain the ability to eat a full bottle by mouth. He can't live at the hospital, so while this isn't ideal, it is what it is. When we tell them the decision tomorrow, they'll get the surgery scheduled for next week and he'll be able to come home the week after. I cannot wait to walk out of that hospital knowing that the next time I come back it will be for an outpatient visit!
We're getting closer and closer to things being "normal". Or, rather, what normal is going to be for us from here on out. The social worker came to talk to me today too. She told me about some programs that we'll qualify for because of Jaxson's medical issues and she's going to hook me up with the rep they have at the hospital so I don't have to deal with regular state run offices. Jaxson can't go to daycare for a variety of reasons, but the one that qualifies him for assistance is the G-tube. I don't know of a single daycare that would accept a child with a tube in his belly. Too much liability. Please do not misunderstand. Jaxson should be taking 150mL by mouth every day. On average, he takes between 30 and 50. So the tube is not a ploy to qualify for government assistance, it is a legitimate need in order for him to come home and learn how to function in the real world.
Physical therapy also came by today. I guess we had a busy day! Jaxson will be fully evaluated tomorrow and a plan will be set to help him learn to use his muscles. I don't think I've mentioned before that he has low muscle tone, but he does. I was given some stretches to do with him and activities to do with him over the next few months to help him develop and grow.
Every single person I've come into contact with at Children's has been amazing. We've had a few nurses that weren't my favorite, but they are few and far between. I feel that we have been so blessed to be where we are and live so close to such an awesome place. I truly feel that Jaxson is getting the best care possible and that he's going to have an excellent plan in place when he leaves. I couldn't ask for more. These people are not only good at what they do, but they genuinely care about these babies and are devoted to delivering quality care while communicating every step with parents.
You know, a lot of people tell me this isn't fair and wonder why all of this is happening to my baby. Sure, I went through that. But now that I've come to terms with how Jaxson's life is going to go, and maybe "come to terms" isn't the right wording, but I get it. This isn't "happening" to my baby or me. Jaxson is a gift. He's taught me more about life in the last month than I have learned in 30 years. He's taught me patience (don't laugh haha!), he's taught me what it looks like to fight and keep on going when it would be so much easier to give up. He's taught me what true strength is and how much of my own strength I have and how to use it. He's taught me how to feel my feelings and understand my emotions, something my logical brain just couldn't comprehend before now. He's teaching me ow to be a better person and a better mom. I am nothing if not blessed by that perfect little boy who has endured so much already.
The road ahead is going to be long and it's going to be bumpy. But I have the best people in the world at my side to travel that road with me. As long as I have them and they have me, everything will be just fine.
Monday, August 6, 2012
Five Day Update - Jaxson's Plan to Come Home
The last five days have been the longest, most exhausting days I have ever experienced. The day after I posted last, Sara went back to the ICU. I knew she had been transferred back there, but what I didn't expect was a phone call from my dad at 8:30pm telling me that I might want to head to the hospital. It was the start of a very long night.
As soon as Jayson got home from seeing Jaxson, I took off to go see my sister. Oxygen saturation plummeted. Possible heart injury. Fluid on her lungs. Heart rate sky high. Blood pressure low. Skin as cold as ice. Literally. Had I not seen her vitals, I would have thought she was dead. I kissed her and made sure she knew I was there, even though she couldn't respond because she was on pain meds. Then I discussed what to do about Ariella and Lexi with my parents. The doctors actually told us to "hang around for awhile." Which made us really nervous. They didn't know if she was going to make it through the night. So I offered to take the girls back to my parents house and take care of them for the night.
I might have a newborn, but I certainly don't feel like it because he hasn't been home yet. I forgot what it's like to only get 2 hours of broken sleep. And to listen to a baby cry. Ellie was really good most of the night, but when I put her down to pump, she became inconsolable. She had been fed and changed so I had no idea why she was crying, and at 5am I was at my wits end. But I got through it and when I picked her back up she was fine. She's still going through some withdrawals, so I'm sure that was part of it, but it was so frustrating. Neither Jeffrey nor Jaxson are big criers, so it was a new experience for me. One that made me appreciate how calm my kids are. And I know that Ellie is just a normal baby, she was just trying to tell me she wanted to be held. I'm just not used to it.
So at 8am on Friday I had to leave my parents and go to Children's to meet with Jaxson's doctor. We set a plan in motion for him to come home. Mind you, I hadn't been home in 12 hours or slept in nearly 24 hours. I managed to get the plan set (I'll get there shortly) and spend a few minutes with Jaxson before heading home. Thankfully, Jeffrey was down for a nap when I got there so I was able to grab a few Z's until he got up. Jayson had to work that night, and thank goodness Jeffrey is an amazing kid. He and I layed around all night.
Meanwhile, I'm getting updates on Sara throughout the day. Nothing much different than when I left. CT on heart and lungs negative for clots, still trying to figure out what is wrong with her. Finally diagnosed with disseminated intravascular coagulation (DIC, see this website http://www.nlm.nih.gov/medlineplus/ency/article/000573.htm). Liver enzymes at 10,000 when they should be 20. Kidney functions okay. EKG on heart normal. Started treatment. She became stable but was still critical.
I'm learning these things during the day as I'm trying to take care of my family, so focusing on both was nearly impossible. Jaxson's plan became to see how he did with his feeds over the next week and go from there. Learned what it meant if he had to come home with a feeding tube. Surprised I can even remember that, will get there shortly.
Saturday morning rolls around. I'm pumping before I head to the hospital. Jayson comes in, "Mom just called and said she needed me, I couldn't understand anything else." My response "Go." I knew what that meant. She either had a stroke or was having a stroke. He went to check on her. Definitely had a stroke. He convinced her to go to the hospital and spent most of the day there with her. I managed to squeeze in an hour with Jaxson, leaving Jeffrey at the clubhouse. They take Julie down for an MRI, Jayson comes home to do a tattoo. He then goes back to see his mom, swings by to see Jaxson and runs by his moms house to let her dog out and feed her. All the while I'm getting updates on Sara. She's doing better but not out of the woods. Jayson and I both crash Saturday night.
Sunday morning, yesterday, I can't even remember what we did. I know I went and saw Jaxson and Jayson went to see his mom and later to see Jaxson. But I think that most of the day we just watched TV and tried to stay up to date on everyone's health status. No change on anyone yesterday.
Today was more of the same. Sara's bloodwork is trending in the right direction. Still doing tests as now she has hyoetenson in her heart and lungs. Good news: they let my mom bring Ellie to the ICU. Sara hadn't seen her since Thursday. Still very critical, but stable. Julie is the same. They want to release her to a rehab facility, so we're working on that. Jayson and I are exhausted. I scraped the back fender on h car at the hospital (if people knew how to park, I wouldn't have cut that so close) and then I dropped my phone. It was a long day.
There is good news here, though. Jaxson got his PICC line out Saturday night. Since then, he's taken anywher from 10 to 38mL from the bottle! He took 22 for me today. Which bodes well for the plan we set in place. Jayson and I decided that we wanted to see how he did once the PICC came out and he was no longer on antibiotics. We are giving him a week to see what he does. On Friday we will reassess the situation and decide what our course of action is. If he's doing well, we may give him another week to see if he can start taking full feeds. If he's progressing, but not quickly, we may say okay it's time for a feeding tube. If we do that, it's still another week before he comes home. It would be his first surgery, making for a total of 4 in his first year. But if it gets him home, I'm okay with that. The tube goes directly in his stomach and cane be covered by a onesie, so the chances of it coming out or getting pulled out are slim to none. And we can guarantee that he's getting enough to eat to grow and be healthy. It's not ideal, but it is what it is.
So everyone is in a place where they're being taken care of and on the right track. Jaxson officially knows when I'm leaving and cried when I put him down today. I was able to calm him down before I left, but I was in tears as I left the hospital. I miss him so much. And I have to go back to work next week. Which is going to be a whole other adventure with scheduling. But we'll deal with it as it comes, just like everything else.
And through all of this, Jayson and I have bitten each others heads off and made the other cry. All with the understanding that it had nothing to do with us, but with everything going on around us. Today I asked Jayson what I could do to help him. He told me to know that he's not mad at me when he bites my head off. I laughed and told him I could do that as long as he understood that it wasn't his fault when I burst into tears. He laughed and said okay. That's just how we've been working. We've been a lot more open with each other, a lot more patient and a lot more understanding. I'm lucky to have such an amazing partner. I know I couldn't do it without him!
It's funny, this blog is designed to chronicle everything Jaxson is going through. But everything going on in my life directly affects Jaxson because it affects my ability to care for him and be there for him. With so much happening in the last few days, poor Jaxson hasn't seen much of his daddy. I've been there almost as much as before, but not quite as much on some days. And he's still fighting through with the help of some amazing nurses and doctors. He's such a strong little boy already, I can't wait to see how much stronger he ends up before this is over.
If you're the praying type, just pray for strength for Jayson and I to continue to do what we do. Understanding for both of us to know when the other is overwhelmed and needs a break. Strength for Jaxson to keep improving so he can come home. Continued understanding from Jeffrey and behavior that shows he's still okay. Pray for Sara and Julie's doctors, that they would ensure proper treatment so they can both come home. Pay for my parents, that they would be able to rest while taking care of a newborn and not kill each other in the process. That they would maintain their sanity as they try t care for two children and support their other two daughters. Pray that we all remain supportive of each other and find some peace on knowing that this is temporary.
Thank you to everyone who has sent me a message or a comment in the lat few days. Even if I haven't responded, I have read all of them. It means so much to hear from everyone, no matter how long it's been since we spoke. Thank you all for everything, and a special thank you to Phil, who brought us dinner on Saturday. The timing was perfect!
As soon as Jayson got home from seeing Jaxson, I took off to go see my sister. Oxygen saturation plummeted. Possible heart injury. Fluid on her lungs. Heart rate sky high. Blood pressure low. Skin as cold as ice. Literally. Had I not seen her vitals, I would have thought she was dead. I kissed her and made sure she knew I was there, even though she couldn't respond because she was on pain meds. Then I discussed what to do about Ariella and Lexi with my parents. The doctors actually told us to "hang around for awhile." Which made us really nervous. They didn't know if she was going to make it through the night. So I offered to take the girls back to my parents house and take care of them for the night.
I might have a newborn, but I certainly don't feel like it because he hasn't been home yet. I forgot what it's like to only get 2 hours of broken sleep. And to listen to a baby cry. Ellie was really good most of the night, but when I put her down to pump, she became inconsolable. She had been fed and changed so I had no idea why she was crying, and at 5am I was at my wits end. But I got through it and when I picked her back up she was fine. She's still going through some withdrawals, so I'm sure that was part of it, but it was so frustrating. Neither Jeffrey nor Jaxson are big criers, so it was a new experience for me. One that made me appreciate how calm my kids are. And I know that Ellie is just a normal baby, she was just trying to tell me she wanted to be held. I'm just not used to it.
So at 8am on Friday I had to leave my parents and go to Children's to meet with Jaxson's doctor. We set a plan in motion for him to come home. Mind you, I hadn't been home in 12 hours or slept in nearly 24 hours. I managed to get the plan set (I'll get there shortly) and spend a few minutes with Jaxson before heading home. Thankfully, Jeffrey was down for a nap when I got there so I was able to grab a few Z's until he got up. Jayson had to work that night, and thank goodness Jeffrey is an amazing kid. He and I layed around all night.
Meanwhile, I'm getting updates on Sara throughout the day. Nothing much different than when I left. CT on heart and lungs negative for clots, still trying to figure out what is wrong with her. Finally diagnosed with disseminated intravascular coagulation (DIC, see this website http://www.nlm.nih.gov/medlineplus/ency/article/000573.htm). Liver enzymes at 10,000 when they should be 20. Kidney functions okay. EKG on heart normal. Started treatment. She became stable but was still critical.
I'm learning these things during the day as I'm trying to take care of my family, so focusing on both was nearly impossible. Jaxson's plan became to see how he did with his feeds over the next week and go from there. Learned what it meant if he had to come home with a feeding tube. Surprised I can even remember that, will get there shortly.
Saturday morning rolls around. I'm pumping before I head to the hospital. Jayson comes in, "Mom just called and said she needed me, I couldn't understand anything else." My response "Go." I knew what that meant. She either had a stroke or was having a stroke. He went to check on her. Definitely had a stroke. He convinced her to go to the hospital and spent most of the day there with her. I managed to squeeze in an hour with Jaxson, leaving Jeffrey at the clubhouse. They take Julie down for an MRI, Jayson comes home to do a tattoo. He then goes back to see his mom, swings by to see Jaxson and runs by his moms house to let her dog out and feed her. All the while I'm getting updates on Sara. She's doing better but not out of the woods. Jayson and I both crash Saturday night.
Sunday morning, yesterday, I can't even remember what we did. I know I went and saw Jaxson and Jayson went to see his mom and later to see Jaxson. But I think that most of the day we just watched TV and tried to stay up to date on everyone's health status. No change on anyone yesterday.
Today was more of the same. Sara's bloodwork is trending in the right direction. Still doing tests as now she has hyoetenson in her heart and lungs. Good news: they let my mom bring Ellie to the ICU. Sara hadn't seen her since Thursday. Still very critical, but stable. Julie is the same. They want to release her to a rehab facility, so we're working on that. Jayson and I are exhausted. I scraped the back fender on h car at the hospital (if people knew how to park, I wouldn't have cut that so close) and then I dropped my phone. It was a long day.
There is good news here, though. Jaxson got his PICC line out Saturday night. Since then, he's taken anywher from 10 to 38mL from the bottle! He took 22 for me today. Which bodes well for the plan we set in place. Jayson and I decided that we wanted to see how he did once the PICC came out and he was no longer on antibiotics. We are giving him a week to see what he does. On Friday we will reassess the situation and decide what our course of action is. If he's doing well, we may give him another week to see if he can start taking full feeds. If he's progressing, but not quickly, we may say okay it's time for a feeding tube. If we do that, it's still another week before he comes home. It would be his first surgery, making for a total of 4 in his first year. But if it gets him home, I'm okay with that. The tube goes directly in his stomach and cane be covered by a onesie, so the chances of it coming out or getting pulled out are slim to none. And we can guarantee that he's getting enough to eat to grow and be healthy. It's not ideal, but it is what it is.
So everyone is in a place where they're being taken care of and on the right track. Jaxson officially knows when I'm leaving and cried when I put him down today. I was able to calm him down before I left, but I was in tears as I left the hospital. I miss him so much. And I have to go back to work next week. Which is going to be a whole other adventure with scheduling. But we'll deal with it as it comes, just like everything else.
And through all of this, Jayson and I have bitten each others heads off and made the other cry. All with the understanding that it had nothing to do with us, but with everything going on around us. Today I asked Jayson what I could do to help him. He told me to know that he's not mad at me when he bites my head off. I laughed and told him I could do that as long as he understood that it wasn't his fault when I burst into tears. He laughed and said okay. That's just how we've been working. We've been a lot more open with each other, a lot more patient and a lot more understanding. I'm lucky to have such an amazing partner. I know I couldn't do it without him!
It's funny, this blog is designed to chronicle everything Jaxson is going through. But everything going on in my life directly affects Jaxson because it affects my ability to care for him and be there for him. With so much happening in the last few days, poor Jaxson hasn't seen much of his daddy. I've been there almost as much as before, but not quite as much on some days. And he's still fighting through with the help of some amazing nurses and doctors. He's such a strong little boy already, I can't wait to see how much stronger he ends up before this is over.
If you're the praying type, just pray for strength for Jayson and I to continue to do what we do. Understanding for both of us to know when the other is overwhelmed and needs a break. Strength for Jaxson to keep improving so he can come home. Continued understanding from Jeffrey and behavior that shows he's still okay. Pray for Sara and Julie's doctors, that they would ensure proper treatment so they can both come home. Pay for my parents, that they would be able to rest while taking care of a newborn and not kill each other in the process. That they would maintain their sanity as they try t care for two children and support their other two daughters. Pray that we all remain supportive of each other and find some peace on knowing that this is temporary.
Thank you to everyone who has sent me a message or a comment in the lat few days. Even if I haven't responded, I have read all of them. It means so much to hear from everyone, no matter how long it's been since we spoke. Thank you all for everything, and a special thank you to Phil, who brought us dinner on Saturday. The timing was perfect!
Wednesday, August 1, 2012
Reality Check
It's been a few days since my last update, mostly because there hasn't been a whole lot to report and I've been too tired to post at the end of the day. So the biggest news is that Jaxson came off of his oxygen on Monday at 11:45am and has been holding his own ever since. That was one of the checkboxes keeping him in the NICU, so we can check it off and move on to the next one.
Aside from the 3 days of antibiotics Jaxson has left, the only other checkbox is his ability to eat from a bottle. Which is slowly moving in the right direction. He isn't eating much at each feed, but he's starting to at least take something. He ranges from 2mL to his max of 36mL. A full feed is 50mL for him right now, so that's what we need him to eat. Every time. On Friday, the doctor and I are going to see where his progress is with feeds as that will be his last day of antibiotics. He should get his PICC line out once those are completed, so the next step is what do we do to get him home.
There are a few things that can happen. One, he improves enough to get the feeding tube out and he comes home on his own. Two, he continues to progress, but not to where he needs to be for the tube to come out, so he comes home with a feeding tube. Three, Jaxson decides he's not ready to come home and throws us some other curve ball that keeps him there longer. I'm banking on him coming home with a feeding tube, as much as that will suck. But I guess if it gets him home then I'll take it. The question is when will that be? We know it will be at least one mor week after this one. Maybe more. It's all going to depend on Jaxson.
Which brings up the bulk of why I'm writing tonight. I go back to work on August 12. I went in to the bank today to talk with Lindsay about the schedule, which she is more than willing to work with me on. I thought I was ready to go back, I still think I am and the distraction will be nice. But I'm also freaking out about it. I trust Jayson with our kids 100%, but I'm a mom. I need to be home to take care of Jaxson. But I sure as heck can't quit my job. And I do think it will be good for me to get out of the house without going to the hospital. But Jaxson might not even be home at first, which is going to be even harder than if he were home. Because there will be days that I won't be able to go and see him. And that makes me sick.
Quite literally it makes me sick. I was up all last night sick to my stomach and I've been nauseous all day. I think this is why. My return to work is drawing near and Jaxson coming home is too. I will get zero bonding time with him. And all of the responsibility will fall on Jayson. I know he can handle it, and it's something we've prepared for with him switching jobs so that he is able to stay home. But I don't think I mentally and emotionally prepared myself for what that would mean with this baby. Jaxson is going to require so much attention and Jeffrey is not going to like sharing his daddy.
I don't know, maybe I'm making something out of nothing. I'm just so worked up about this whole situation. Everything is going in the right direction and here I am freaking out because I'm not ready for it. This is just not the way things are supposed to go when you have a baby. You're supposed to come home together, get used to each other, get on a schedule together, and then move forward with life. It's been 4 weeks today since Jaxson was born and I hardly feel like I have two kids. So now I get to adjust to having two kids at home while working a full time job and trying to get my Buckeyes website back on track. It's very overwhelming. And I'm not sure I can handle it.
Well, I will handle it I guess, it's just a matter of how well I handle it. And maybe I'll be fine when the time comes. Maybe it's just the anticipation that has me all worked up because there's still so much that's unknown. That's probably a lot of it, actually. I need to plan, and there is no plan. There can't be a plan because so much depends on Jaxson. The little guy is giving me an ulcer and he's barely a month old!
In better news, Ariella was discharged from the hospital today and is at home with my parents. Sara is on the mend too and we should have a plan for her discharge tomorrow after she talks to the doctors. It seems like everything is under control and stable for her right now, so hopefully it stays that way and she can get home to her baby very soon.
And I had my follow up with the doctor for my C-Section yesterday. I'm healing up nicely and I've lost 12.5 pounds. It's not as much as I would like, but I was given I the okay to ease into working out again. So hopefully I'll drop the rest of this weight pretty quickly. I know that exercise will help me stay even and less anxious as well.
So maybe I'm just feeling this way because everything is calming down. Life has been so busy and crazy between going into labor early, learning about Jaxson's unexpected issues, traveling between two hospitals to visit my son and my sister, and trying to keep up with my other son and husband. I think I just got used to crazy and didn't have time to think about anything else. Now I have to remember what reality is like and face it head on. Time for me to suck it up and do what's best for my family instead of hiding out and pretending like I can ignore the rest of the world.
I'm sure it's nothing a glass of wine can't handle, right?
Aside from the 3 days of antibiotics Jaxson has left, the only other checkbox is his ability to eat from a bottle. Which is slowly moving in the right direction. He isn't eating much at each feed, but he's starting to at least take something. He ranges from 2mL to his max of 36mL. A full feed is 50mL for him right now, so that's what we need him to eat. Every time. On Friday, the doctor and I are going to see where his progress is with feeds as that will be his last day of antibiotics. He should get his PICC line out once those are completed, so the next step is what do we do to get him home.
There are a few things that can happen. One, he improves enough to get the feeding tube out and he comes home on his own. Two, he continues to progress, but not to where he needs to be for the tube to come out, so he comes home with a feeding tube. Three, Jaxson decides he's not ready to come home and throws us some other curve ball that keeps him there longer. I'm banking on him coming home with a feeding tube, as much as that will suck. But I guess if it gets him home then I'll take it. The question is when will that be? We know it will be at least one mor week after this one. Maybe more. It's all going to depend on Jaxson.
Which brings up the bulk of why I'm writing tonight. I go back to work on August 12. I went in to the bank today to talk with Lindsay about the schedule, which she is more than willing to work with me on. I thought I was ready to go back, I still think I am and the distraction will be nice. But I'm also freaking out about it. I trust Jayson with our kids 100%, but I'm a mom. I need to be home to take care of Jaxson. But I sure as heck can't quit my job. And I do think it will be good for me to get out of the house without going to the hospital. But Jaxson might not even be home at first, which is going to be even harder than if he were home. Because there will be days that I won't be able to go and see him. And that makes me sick.
Quite literally it makes me sick. I was up all last night sick to my stomach and I've been nauseous all day. I think this is why. My return to work is drawing near and Jaxson coming home is too. I will get zero bonding time with him. And all of the responsibility will fall on Jayson. I know he can handle it, and it's something we've prepared for with him switching jobs so that he is able to stay home. But I don't think I mentally and emotionally prepared myself for what that would mean with this baby. Jaxson is going to require so much attention and Jeffrey is not going to like sharing his daddy.
I don't know, maybe I'm making something out of nothing. I'm just so worked up about this whole situation. Everything is going in the right direction and here I am freaking out because I'm not ready for it. This is just not the way things are supposed to go when you have a baby. You're supposed to come home together, get used to each other, get on a schedule together, and then move forward with life. It's been 4 weeks today since Jaxson was born and I hardly feel like I have two kids. So now I get to adjust to having two kids at home while working a full time job and trying to get my Buckeyes website back on track. It's very overwhelming. And I'm not sure I can handle it.
Well, I will handle it I guess, it's just a matter of how well I handle it. And maybe I'll be fine when the time comes. Maybe it's just the anticipation that has me all worked up because there's still so much that's unknown. That's probably a lot of it, actually. I need to plan, and there is no plan. There can't be a plan because so much depends on Jaxson. The little guy is giving me an ulcer and he's barely a month old!
In better news, Ariella was discharged from the hospital today and is at home with my parents. Sara is on the mend too and we should have a plan for her discharge tomorrow after she talks to the doctors. It seems like everything is under control and stable for her right now, so hopefully it stays that way and she can get home to her baby very soon.
And I had my follow up with the doctor for my C-Section yesterday. I'm healing up nicely and I've lost 12.5 pounds. It's not as much as I would like, but I was given I the okay to ease into working out again. So hopefully I'll drop the rest of this weight pretty quickly. I know that exercise will help me stay even and less anxious as well.
So maybe I'm just feeling this way because everything is calming down. Life has been so busy and crazy between going into labor early, learning about Jaxson's unexpected issues, traveling between two hospitals to visit my son and my sister, and trying to keep up with my other son and husband. I think I just got used to crazy and didn't have time to think about anything else. Now I have to remember what reality is like and face it head on. Time for me to suck it up and do what's best for my family instead of hiding out and pretending like I can ignore the rest of the world.
I'm sure it's nothing a glass of wine can't handle, right?
Saturday, July 28, 2012
More Ups and Downs
Today was such a blah day. I think there was a bit of a letdown after yesterday went so well, which is to be expected in our current situation. Plus we got some not so hot news about Sara. So I'll start there tonight.
Two days ago, after they had taken Sara off of the blood thinners to figure out where her bleeding was, she developed a clot in her right arm. The doctors determined that they were going to let the blood thinners take care of it since they had already started her back on them. Today, Sara developed a high fever over 103, her heart rate jumped up over 100 and her oxygen saturation dropped into the 70s. This prompted the doctors to do a chest X-ray and CT scan to look for a clot in her lungs. Preliminary results show no clot, but they aren't finished reading her scans so I'm not sure if there's anything else. But something is obviously causing her to have all of these problems, it's just a matter of finding out what it is. Thankfully, she has the same nurse tonight that she had last night when she was having problems. This nurse is the reason Sara had those tests and the reason she has oxygen in her room now. So hopefully they'll be able to figure something else out tonight or tomorrow.
I haven't been able to visit Sara as much as I'd like because I go to visit Jaxson every day, so tonight I made sure I got there to see her. Her heart rate was still high, blood pressure is high, hemoglobin is low, and oxygen saturation is low without the cannula (prongs in the nose). Her fever also came back as soon as the Tylenol wore off. She's being such a trooper through all of this. I know she doesn't feel well and it's frustrating when the doctors and nurses don't take you seriously all of the time. But her body is clearly trying to tell us something. I just hope they figure it out before they send her home and she loses oxygen saturation while she sleeps. Scary thought, huh? Yeah, I agree.
And then there's Lexi, who's possibly the most awesome nine year old ever. I know she's worried about her mom and scared of what's going on, but you wouldn't know it to talk to her. I know she shows more emotion to my parents than to anyone else, but she's such a strong little girl. I worry about her through all of this. Her mom and her sister have been in the hospital for two weeks. She misses them a lot, no matter how we try to distract her or how often she gets to see them. I just want to squeeze her.
Jaxson isn't entirely out of the woods either. He's doing amazing with his antibiotics and he's eating decently from the bottle too. He actually took 15mL for me today, 12 for the morning nurse, and 8 twice this afternoon. It's progress. The only "bad" thing that happened today was that Children's called us to let us know that there was a little blood in his feeding tube. It's nothing anyone is worried about because it was bright red and likely happened when he sneezed or something. But they are keeping an eye on it to make sure it doesn't continue. Overall he's imroving, which is why I felt comfortable leaving when I did today.
My day didn't go as planned, though, and it seems as if that's going to be a running trend. The plan was for me to go see Jaxson, then Jayson and Jeffrey would meet me down there and Jeffrey would go to the clubhouse for awhile. Jayson would then go to work and I would get a little extra time with Jaxson since I left early yesterday, and Jeffrey would just get a late nap. Then my mom called with the news about Sara. I didn't want to take the chance that Jeffrey wouldn't get a nap, so I left when Jayson did to come home and put him to bed. So I didn't get that much time with Jaxson. Again. It's killing me to have two kids in different places. I can't be two places at once, much as I would like.
While I hate that I can't have my boys both at home, I have to applaud Jeffrey once again. He is, by far, the absolute best three year old on the planet. I took him with me to go see Sara and he was so well behaved. I had to get on him a couple of times for not listening, but that's normal for any three year old. He's just so good and entertains himself so well with the iPad or his toys. I suppose I can take some credit for that ;) it's also the reason he gets his way a little more right now than he used to. He deserves it for being the way that he is and being the best big brother Jaxson could have.
So now I'm home with my monster. Nothing new one Sara and nothing new on Jaxson. With Jaxson, no news is good news. With Sara, it just means they haven't figured it out yet. Hopefully the news I get tomorrow is all positive on both counts. I'm also looking forward to getting some time with my husband tomorrow. Thanks to my fabulous mother-in-law who's going to watch Jeffrey for a few hours for us. No idea what we're doing yet, but it will be together!
Two days ago, after they had taken Sara off of the blood thinners to figure out where her bleeding was, she developed a clot in her right arm. The doctors determined that they were going to let the blood thinners take care of it since they had already started her back on them. Today, Sara developed a high fever over 103, her heart rate jumped up over 100 and her oxygen saturation dropped into the 70s. This prompted the doctors to do a chest X-ray and CT scan to look for a clot in her lungs. Preliminary results show no clot, but they aren't finished reading her scans so I'm not sure if there's anything else. But something is obviously causing her to have all of these problems, it's just a matter of finding out what it is. Thankfully, she has the same nurse tonight that she had last night when she was having problems. This nurse is the reason Sara had those tests and the reason she has oxygen in her room now. So hopefully they'll be able to figure something else out tonight or tomorrow.
I haven't been able to visit Sara as much as I'd like because I go to visit Jaxson every day, so tonight I made sure I got there to see her. Her heart rate was still high, blood pressure is high, hemoglobin is low, and oxygen saturation is low without the cannula (prongs in the nose). Her fever also came back as soon as the Tylenol wore off. She's being such a trooper through all of this. I know she doesn't feel well and it's frustrating when the doctors and nurses don't take you seriously all of the time. But her body is clearly trying to tell us something. I just hope they figure it out before they send her home and she loses oxygen saturation while she sleeps. Scary thought, huh? Yeah, I agree.
And then there's Lexi, who's possibly the most awesome nine year old ever. I know she's worried about her mom and scared of what's going on, but you wouldn't know it to talk to her. I know she shows more emotion to my parents than to anyone else, but she's such a strong little girl. I worry about her through all of this. Her mom and her sister have been in the hospital for two weeks. She misses them a lot, no matter how we try to distract her or how often she gets to see them. I just want to squeeze her.
Jaxson isn't entirely out of the woods either. He's doing amazing with his antibiotics and he's eating decently from the bottle too. He actually took 15mL for me today, 12 for the morning nurse, and 8 twice this afternoon. It's progress. The only "bad" thing that happened today was that Children's called us to let us know that there was a little blood in his feeding tube. It's nothing anyone is worried about because it was bright red and likely happened when he sneezed or something. But they are keeping an eye on it to make sure it doesn't continue. Overall he's imroving, which is why I felt comfortable leaving when I did today.
My day didn't go as planned, though, and it seems as if that's going to be a running trend. The plan was for me to go see Jaxson, then Jayson and Jeffrey would meet me down there and Jeffrey would go to the clubhouse for awhile. Jayson would then go to work and I would get a little extra time with Jaxson since I left early yesterday, and Jeffrey would just get a late nap. Then my mom called with the news about Sara. I didn't want to take the chance that Jeffrey wouldn't get a nap, so I left when Jayson did to come home and put him to bed. So I didn't get that much time with Jaxson. Again. It's killing me to have two kids in different places. I can't be two places at once, much as I would like.
While I hate that I can't have my boys both at home, I have to applaud Jeffrey once again. He is, by far, the absolute best three year old on the planet. I took him with me to go see Sara and he was so well behaved. I had to get on him a couple of times for not listening, but that's normal for any three year old. He's just so good and entertains himself so well with the iPad or his toys. I suppose I can take some credit for that ;) it's also the reason he gets his way a little more right now than he used to. He deserves it for being the way that he is and being the best big brother Jaxson could have.
So now I'm home with my monster. Nothing new one Sara and nothing new on Jaxson. With Jaxson, no news is good news. With Sara, it just means they haven't figured it out yet. Hopefully the news I get tomorrow is all positive on both counts. I'm also looking forward to getting some time with my husband tomorrow. Thanks to my fabulous mother-in-law who's going to watch Jeffrey for a few hours for us. No idea what we're doing yet, but it will be together!
Friday, July 27, 2012
No More Infection!
Today was a fabulous day! I went to see Jaxson as I do every morning with the intention of leaving around 1 to head home and take care of Jeffrey while Jayson went to work. Well, Jeffrey had other ideas. He and Jayson were at the park and Jeffrey fell. He was done at the park after that and asked to come to the hospital. Then he asked if I was there because he wanted to see me and spend time with me. I love that kid!
Meanwhile, I was hanging out with Jaxson who looked absolutely amazing today. He had his color back and was acting much better. Which makes sense as his hemoglobin was up to 12.1! I was able to feed him this morning too, which was nice because he hasn't had food in three days. They started him on half-feeds to make sure his body would tolerate the food on top of the antibiotics, and he at the full 24mL for me! I was so excited! Not only is that the most he's ever taken for me, but it's the most he's ever taken altogether.
The doctors made no changes to Jaxson's care today, just trying to get him back on regular feeds again. All of his cultures came back negative, so he's on antibiotics for 10 more days. That also meant that they didn't have to draw blood today, yay! They'll have to take some tomorrow or the next day I think because they'll check it again to make sure everything is still the same, but he gets to go a day or two without getting stuck.
Once I saw that Jaxson was okay, I decided to leave when Jayson left this morning. Jeffrey was all about spending time with me, so I wanted to make sure I gave that to him. We went to lunch together and then came home and played before he took a nap. While he slept, I picked up the house and did a load of laundry. I also checked the mail and had something from my payroll department. I thought that was odd so I opened it and it was a pay stub. Now I was thoroughly confused, so I checked my bank account and sure enough, I had more money! They made an additional deposit on Monday, which I hadn't seen yet, as an adjustment to the mess up from the week before. So, while Jeffrey slept I paid all of our bills!
Talk about a great feeling! When Jeffrey woke up, I fed him some chicken nuggets and then we went to the store to get groceries. And this kid has been at my side all day. He's currently laying in bed next to me watching the opening ceremonies of the Olympics because he wants to sleep with me. I think he's enjoyed spending so much time with me today, I know I enjoyed spending time with him! He's such an amazing kid. I couldn't ask for a better son, and I can't imagine any other three year old reacting this way to our current situation.
I feel so relieved. A huge weight was lifted off of my shoulders with that paycheck. Now everything is paid and caught up the way it should be. And I really don't hurt that much after all the moving around I did today. I'm kind of surprised because I felt like I was pushing it by going to the grocery store. And I might be a little more sore than I normally am, but I feel pretty good overall. Of course, I may pay for this all tomorrow, but for now I'll take it.
Meanwhile, I was hanging out with Jaxson who looked absolutely amazing today. He had his color back and was acting much better. Which makes sense as his hemoglobin was up to 12.1! I was able to feed him this morning too, which was nice because he hasn't had food in three days. They started him on half-feeds to make sure his body would tolerate the food on top of the antibiotics, and he at the full 24mL for me! I was so excited! Not only is that the most he's ever taken for me, but it's the most he's ever taken altogether.
The doctors made no changes to Jaxson's care today, just trying to get him back on regular feeds again. All of his cultures came back negative, so he's on antibiotics for 10 more days. That also meant that they didn't have to draw blood today, yay! They'll have to take some tomorrow or the next day I think because they'll check it again to make sure everything is still the same, but he gets to go a day or two without getting stuck.
Once I saw that Jaxson was okay, I decided to leave when Jayson left this morning. Jeffrey was all about spending time with me, so I wanted to make sure I gave that to him. We went to lunch together and then came home and played before he took a nap. While he slept, I picked up the house and did a load of laundry. I also checked the mail and had something from my payroll department. I thought that was odd so I opened it and it was a pay stub. Now I was thoroughly confused, so I checked my bank account and sure enough, I had more money! They made an additional deposit on Monday, which I hadn't seen yet, as an adjustment to the mess up from the week before. So, while Jeffrey slept I paid all of our bills!
Talk about a great feeling! When Jeffrey woke up, I fed him some chicken nuggets and then we went to the store to get groceries. And this kid has been at my side all day. He's currently laying in bed next to me watching the opening ceremonies of the Olympics because he wants to sleep with me. I think he's enjoyed spending so much time with me today, I know I enjoyed spending time with him! He's such an amazing kid. I couldn't ask for a better son, and I can't imagine any other three year old reacting this way to our current situation.
I feel so relieved. A huge weight was lifted off of my shoulders with that paycheck. Now everything is paid and caught up the way it should be. And I really don't hurt that much after all the moving around I did today. I'm kind of surprised because I felt like I was pushing it by going to the grocery store. And I might be a little more sore than I normally am, but I feel pretty good overall. Of course, I may pay for this all tomorrow, but for now I'll take it.
Thursday, July 26, 2012
Blood Transfusion
It was another long day at the hospital today. I got there only to learn that Jaxson's hemoglobin dropped to 7.4 and he would need a blood transfusion. There wasn't enough time to have them check and see if I was a match, plus they were only giving him 45mL, so they referred to the blood bank to get what they needed. Before they could do that, though, they had to draw more blood for labs and get an IV started. Jaxson's previous IV came out last night because he peed when they were changing him and it got all over his IV, the dressing and his ID band. Which really sucked since they had to get him another IV today.
If you read the blog from two days ago, then you know how hard of a time they had getting Jaxson's IV in and blood drawn the other day. It took 10 sticks, three hours and the IV team to get it done. Unfortunately, today was no different. Except that I stayed in the room this time. Ten more sticks from four people and another 3 hours later they finally had enough blood for the cultures but no dice on the IV. Doctor said not to stick him again and they would just do the transfusion into the PICC line. They prefer not to do it hip that way, but at least they stopped sticking my baby. And he did so well through all of that. He didn't cry at all for the first person, who stuck him twice. And I think he only started crying for the next two because he was tired of being touched and held down.
Once they got all that done, Jaxson was quite content to lay on my chest and chill out for awhile. And no wonder, besides all of those people messing with him to try and get his blood, they had to use a catheter and get a urine sample and receive his antibiotics during that time. Then it was time for them to start his blood, which they administered over a two hour period. I could have held him during that time, but he was on a pretty short "leash" with the blood and I figured it was better to let him rest. He got a little fussy toward the end, so I did pick him up then, but I think he was pretty happy to lay in his bed and be left alone.
Once the transfusion was done, you could see how much better he felt already. He was already looking and acting better that morning with the aid of the antibiotics, but he was still pale and not quite himself. He was definitely almost back to his normal skin color when I left, and he was awake and alert and responsive to my and my moms voices. It made me feel a whole lot better about leaving to pick up Jeffrey.
Right before we left, the nurse practitioner came in and let me know that the bacteria in Jaxson's urine was the same as what was in his blood, so the two infections were definitely related. They also said he was already on the right antibiotics and they were going to continue to monitor his reactions to them. They'll check his hemoglobin again around 1am an they'll do more blood cultures tomorrow to see how his infections are doing. I'm hopeful that those test will come back negative tomorrow. Once they do, Jaxson will have to be on antibiotics for an additional 10 days. Which means he'll have the PICC for at least that long.
But, as long as he's reacting well to everything, they were going to start allowing him to eat again tonight. So at least we can get that back on track. And they put his oxygen back down to 0.1 to try and get him off of it as well. So things are moving in the right direction again and I'm crossing my fingers that he really picks up on his eating after this. He was working really hard on his pacifier today, pretty much all day while people messed with him because I was holding it in his mouth. I think he would have rated well today if he were allowed.
My body is so tied. When I got up this morning, I had every intention of leaving the hospital at 1pm to come home and spend time with Jeffrey while Jayson was at work. But Jaxson had other ideas and I didn't end up leaving until almost 6pm. Thankfully my dad was able to watch Jeffrey today which allowed me to be with Jaxson during all of this stuff today. I finally got back home around 8, only to go straight to my room an pump. Oh yes, I did that every 3 hours today too. I'm beat. I miss Jeffrey terribly and I know he misses me. I miss Jayson. I miss my dog.
I also came to the realization today that Jaxson is not going to be home before I have to go back to work. I don't even know how that's going to work. I know I can call as often as I want, but it's not the same when I can't see him myself. And if I think I'm tired now, how am I going to feel when I have to work an 8 hour day, come home and take care of Jeffrey and still try to find time to see Jaxson. And it feels like I'm never going to see my husband again.
And now I'm just whining. Jaxson is in the best place possible for him and he's getting the care and attention he needs. Jeffrey will bounce back from this just like everything else that's been thrown at him. Jayson and I will have plenty of time together in the future, so sacrificing a ittle right now isn't the end of the world. And sleep is overrated anyway, so I'll just keep drinking my coffee. I'm very lucky and blessed to have an excellent family and support system. Not everyone in this situation can say the same, so I try not to complain.
On that note, I think it's time for me to take a quick nap before I pump one last time. Jeffrey has already fallen asleep with his hand on my leg and Jayson went to check on Jaxson so I can rest a little easier tonight. Thank you to everyone who has been praying! We'll take as many of those as we can get! And for those of you asking how you can help, the biggest thing besides prayers we could use is food. Having any sort of meal that doesn't consist of fast food doesn't happen often because of all of our running. So if you are looking for a way to help out, cook us dinner one night. Something that will keep if there ar leftovers, or can be frozen if people all show up at once. I think that would be a huge help for all of us. But please don't feel obligated, I only mention it for the people who have asked how they can help. And we thank you in advance for any type of support you've given, even if it's just to drop a line and let us know you're thinking about us. That means more than you know!
If you read the blog from two days ago, then you know how hard of a time they had getting Jaxson's IV in and blood drawn the other day. It took 10 sticks, three hours and the IV team to get it done. Unfortunately, today was no different. Except that I stayed in the room this time. Ten more sticks from four people and another 3 hours later they finally had enough blood for the cultures but no dice on the IV. Doctor said not to stick him again and they would just do the transfusion into the PICC line. They prefer not to do it hip that way, but at least they stopped sticking my baby. And he did so well through all of that. He didn't cry at all for the first person, who stuck him twice. And I think he only started crying for the next two because he was tired of being touched and held down.
Once they got all that done, Jaxson was quite content to lay on my chest and chill out for awhile. And no wonder, besides all of those people messing with him to try and get his blood, they had to use a catheter and get a urine sample and receive his antibiotics during that time. Then it was time for them to start his blood, which they administered over a two hour period. I could have held him during that time, but he was on a pretty short "leash" with the blood and I figured it was better to let him rest. He got a little fussy toward the end, so I did pick him up then, but I think he was pretty happy to lay in his bed and be left alone.
Once the transfusion was done, you could see how much better he felt already. He was already looking and acting better that morning with the aid of the antibiotics, but he was still pale and not quite himself. He was definitely almost back to his normal skin color when I left, and he was awake and alert and responsive to my and my moms voices. It made me feel a whole lot better about leaving to pick up Jeffrey.
Right before we left, the nurse practitioner came in and let me know that the bacteria in Jaxson's urine was the same as what was in his blood, so the two infections were definitely related. They also said he was already on the right antibiotics and they were going to continue to monitor his reactions to them. They'll check his hemoglobin again around 1am an they'll do more blood cultures tomorrow to see how his infections are doing. I'm hopeful that those test will come back negative tomorrow. Once they do, Jaxson will have to be on antibiotics for an additional 10 days. Which means he'll have the PICC for at least that long.
But, as long as he's reacting well to everything, they were going to start allowing him to eat again tonight. So at least we can get that back on track. And they put his oxygen back down to 0.1 to try and get him off of it as well. So things are moving in the right direction again and I'm crossing my fingers that he really picks up on his eating after this. He was working really hard on his pacifier today, pretty much all day while people messed with him because I was holding it in his mouth. I think he would have rated well today if he were allowed.
My body is so tied. When I got up this morning, I had every intention of leaving the hospital at 1pm to come home and spend time with Jeffrey while Jayson was at work. But Jaxson had other ideas and I didn't end up leaving until almost 6pm. Thankfully my dad was able to watch Jeffrey today which allowed me to be with Jaxson during all of this stuff today. I finally got back home around 8, only to go straight to my room an pump. Oh yes, I did that every 3 hours today too. I'm beat. I miss Jeffrey terribly and I know he misses me. I miss Jayson. I miss my dog.
I also came to the realization today that Jaxson is not going to be home before I have to go back to work. I don't even know how that's going to work. I know I can call as often as I want, but it's not the same when I can't see him myself. And if I think I'm tired now, how am I going to feel when I have to work an 8 hour day, come home and take care of Jeffrey and still try to find time to see Jaxson. And it feels like I'm never going to see my husband again.
And now I'm just whining. Jaxson is in the best place possible for him and he's getting the care and attention he needs. Jeffrey will bounce back from this just like everything else that's been thrown at him. Jayson and I will have plenty of time together in the future, so sacrificing a ittle right now isn't the end of the world. And sleep is overrated anyway, so I'll just keep drinking my coffee. I'm very lucky and blessed to have an excellent family and support system. Not everyone in this situation can say the same, so I try not to complain.
On that note, I think it's time for me to take a quick nap before I pump one last time. Jeffrey has already fallen asleep with his hand on my leg and Jayson went to check on Jaxson so I can rest a little easier tonight. Thank you to everyone who has been praying! We'll take as many of those as we can get! And for those of you asking how you can help, the biggest thing besides prayers we could use is food. Having any sort of meal that doesn't consist of fast food doesn't happen often because of all of our running. So if you are looking for a way to help out, cook us dinner one night. Something that will keep if there ar leftovers, or can be frozen if people all show up at once. I think that would be a huge help for all of us. But please don't feel obligated, I only mention it for the people who have asked how they can help. And we thank you in advance for any type of support you've given, even if it's just to drop a line and let us know you're thinking about us. That means more than you know!
Wednesday, July 25, 2012
Urinary Tract and Blood Infections
Today was another long day. It started with a phone call from Children's at 6:30 this morning. Thankfully, I was already up and pumping so it didn't wake me up. I think that would have been worse. The night nurse was getting ready to leave and wanted to update me before she left. More of Jaxson's tests came back. Not only does Jaxson have a urinary tract infection, but he has a blood infection. And a pretty serious one. I forget what the doctor called it, but it's something that's pretty concerning in babies. So they put him on an additional antibiotic that's pretty strong and has the potential to make him sick. So I finished what I was doing and left the house to go see my baby.
He still looked really pale when I got there this morning and after talking to the doctor, I learned that his blood count was down to 8.4. It still wasn't low enough for them to do a transfusion unless he started showing signs that he needed it. The doctor was really surprised that the infection spread to his blood and she told me that if he got any sicker they would move him back up to the NICU where he would have his own nurse. They decided to stop feeding him and go back to giving him nutrition through his PICC line. So his feeding tube is gone, which is nice in a way. I'm sure it feels better to not have that in.
I left for a few hours in the afternoon to come home and see my boys and then went back this evening for about an hour. When I went back, he still looked pretty pale, but he was awake and alert. I held him the whole time I was there and all he wanted was to look at mommy. I also found out when I went back that they got his respiratory tests back and everything was negative, so once they get approval in the morning, we can lose the gear! I'm really hoping that happens because it really sucks to not be able to touch him.
Jaxson is showing us what a true fighter he is. He knows that if he gets sicker he's moving back up to the other floor and I really think he likes where he is now. The Ono sign that the antibiotics are bothering him is he's got a ittle diarrhea. He hasn't thrown up and his vitals have remained stable. His breathing and heart rate are a little higher than what he usually runs, but it's nothing dangerous.
I really enjoyed seeing him awake and looking around tonight. He's felt so crappy for the last two days that all he's done is sleep. While that's nice for cuddles and naps, I was really concerned about him because you could just tell he wasn't feeling well. So seeing him perk up this evening really made me relax a little. I'll still call to check on him before I go to bed and see if there's any updates on the rest of his test results.
Th biggest frustration I have with this whole thing is not just that he has all of these lines back in him again, but that he's stopped getting food. I need him to eat so he can come home and this is definitely setting him back. I suppose I can hold out hope that he'll be ready for the bottle when they let him eat again, but it's not very likely. And I'm supposed to go back to work in a few weeks :/ that's going to absolutely kill me, but it is what it is. I just hope he pulls it together so I don't have to worry about it.
In other good news, Sara is on the mend too. The doctors hope to have her moved out of ICU tomorrow so she can see her baby again. And Ariella should be discharged tomorrow, so she'll likely get moved to Sara's room anyway. I'm so happy that she's doing better! There has been so much going on that I haven't been able to see her, but I plan on getting there in the next day or so to see her for myself and squeeze Ariella.
In another month, everyone is going to be home and we're all going to look at this as a bad dream. Except we have pictures as evidence that it happened.
Tomorrow I'll get more information abut Jaxson's condition and how he's doing. Hopefully his blood count is back up and his infection is gone. Once that test comes back negative, he has to be on antibiotics for 10 more days. Which means that's how long the PICC will stay in, although that doesn't mean he won't eat I think. I'm also hoping that I'll have the results from the rest of his cultures in the morning so we an rest easy knowing what we're dealing with. Praying for good news tomorrow for baby Jaxson!
He still looked really pale when I got there this morning and after talking to the doctor, I learned that his blood count was down to 8.4. It still wasn't low enough for them to do a transfusion unless he started showing signs that he needed it. The doctor was really surprised that the infection spread to his blood and she told me that if he got any sicker they would move him back up to the NICU where he would have his own nurse. They decided to stop feeding him and go back to giving him nutrition through his PICC line. So his feeding tube is gone, which is nice in a way. I'm sure it feels better to not have that in.
I left for a few hours in the afternoon to come home and see my boys and then went back this evening for about an hour. When I went back, he still looked pretty pale, but he was awake and alert. I held him the whole time I was there and all he wanted was to look at mommy. I also found out when I went back that they got his respiratory tests back and everything was negative, so once they get approval in the morning, we can lose the gear! I'm really hoping that happens because it really sucks to not be able to touch him.
Jaxson is showing us what a true fighter he is. He knows that if he gets sicker he's moving back up to the other floor and I really think he likes where he is now. The Ono sign that the antibiotics are bothering him is he's got a ittle diarrhea. He hasn't thrown up and his vitals have remained stable. His breathing and heart rate are a little higher than what he usually runs, but it's nothing dangerous.
I really enjoyed seeing him awake and looking around tonight. He's felt so crappy for the last two days that all he's done is sleep. While that's nice for cuddles and naps, I was really concerned about him because you could just tell he wasn't feeling well. So seeing him perk up this evening really made me relax a little. I'll still call to check on him before I go to bed and see if there's any updates on the rest of his test results.
Th biggest frustration I have with this whole thing is not just that he has all of these lines back in him again, but that he's stopped getting food. I need him to eat so he can come home and this is definitely setting him back. I suppose I can hold out hope that he'll be ready for the bottle when they let him eat again, but it's not very likely. And I'm supposed to go back to work in a few weeks :/ that's going to absolutely kill me, but it is what it is. I just hope he pulls it together so I don't have to worry about it.
In other good news, Sara is on the mend too. The doctors hope to have her moved out of ICU tomorrow so she can see her baby again. And Ariella should be discharged tomorrow, so she'll likely get moved to Sara's room anyway. I'm so happy that she's doing better! There has been so much going on that I haven't been able to see her, but I plan on getting there in the next day or so to see her for myself and squeeze Ariella.
In another month, everyone is going to be home and we're all going to look at this as a bad dream. Except we have pictures as evidence that it happened.
Tomorrow I'll get more information abut Jaxson's condition and how he's doing. Hopefully his blood count is back up and his infection is gone. Once that test comes back negative, he has to be on antibiotics for 10 more days. Which means that's how long the PICC will stay in, although that doesn't mean he won't eat I think. I'm also hoping that I'll have the results from the rest of his cultures in the morning so we an rest easy knowing what we're dealing with. Praying for good news tomorrow for baby Jaxson!
Tuesday, July 24, 2012
Semi-Update, PICC Back In
As you can see from the earlier post, today was a very long day. I walked into a mess at 9:15 this morning and didn't get home until almost 9pm tonight. Jaxson spiked a fever over 102 and his heart rate jumped into the 200s. They did bloodwork, a urinalysis, a chest X-ray and a lumbar puncture. It took three hours, several blown veins and the IV team to finally get an IV in the top of Jaxson's foot. Not the idea spot for it and it will likely come out soon. Because they had so much trouble with that and the likelihood that his vein blows again or the IV doesn't last is so great, they decided to put his PICC line back in. And they upped his oxygen to 0.5 again. It's one less thing for his little body to stress about while he goes through all of these other things.
If you don't know the difference, you know an IV is a short needle that goes right into your vein and is not ideal for long term use in babies because they can't control their movements. A PICC line is a long line that kind of looks like floss. It runs up the arm or through the groin and goes straight to the heart. They actually have to measure the line before they put it in and after it comes out to make sure that nothing breaks off inside the body. It's very rare that that would happen, but it is still something they have to do. The PICC is much more ideal for long term use in babies because of its strength and flexibility. I hated to sign the consent for the PICC because I want the lines out of him, not in. But it was best for him, so it's back in.
We had a few results before I left tonight, but I'll know more in the morning after I talk to the doctor. The urinalysis showed that his white cell count was in the 200s, which means he has a urinary tract infection. They think this is the culprit of his fever, but babies tend to not contain infection to one place so they still did everything else. The chest X-ray showed mild swelling in his lungs, which they are not concerned about right now. I'll ask about that in the morning. His blood count was 8.7, and it should be 10. So it's causing him to be tired and pale. They think it's low because they took blood from him, and I think they're going to check it again tomorrow. If he shows any signs of it being low or if it drops, he'll have to have a transfusion. Which is why the IV is still in his foot. A transfusion can't go in the PICC, it has to go in an IV. So my hope is that I walk in to no IV in the morning!
I'm praying that Jaxson just has a urinary tract infection and nothing else. Those are tolerable and easily treated with antibiotics. Then I think we'd just have to get urology involved to decide if anything is to be done about his extra ureter.
Throughout the day I checked in on Facebook and revived countless comments and messages from friends and family. I also had several visitors today so that I wasn't alone at the hospital. The she amount of texts, messages and comments is truly overwhelming and I can't thank everyone enough for reaching out. Even if I haven't responded to you (patience, I'll get there!), please know that I received your note and I appreciate it more than you know.
On a brighter note, after a very rough start to the week of Sara, they've discovered that she had a bleeding ulcer. She had an endoscopy tonight and they found a bleeding ulcer that exposed an artery. They clipped off the artery and are pretty sure that should fix the problem. They are hopeful that they'll be able to start her blood thinners back up tomorrow afternoon. Thank God for small favors!
And now it's time to move my other monster from my bed to his so I can get some rest myself.
If you don't know the difference, you know an IV is a short needle that goes right into your vein and is not ideal for long term use in babies because they can't control their movements. A PICC line is a long line that kind of looks like floss. It runs up the arm or through the groin and goes straight to the heart. They actually have to measure the line before they put it in and after it comes out to make sure that nothing breaks off inside the body. It's very rare that that would happen, but it is still something they have to do. The PICC is much more ideal for long term use in babies because of its strength and flexibility. I hated to sign the consent for the PICC because I want the lines out of him, not in. But it was best for him, so it's back in.
We had a few results before I left tonight, but I'll know more in the morning after I talk to the doctor. The urinalysis showed that his white cell count was in the 200s, which means he has a urinary tract infection. They think this is the culprit of his fever, but babies tend to not contain infection to one place so they still did everything else. The chest X-ray showed mild swelling in his lungs, which they are not concerned about right now. I'll ask about that in the morning. His blood count was 8.7, and it should be 10. So it's causing him to be tired and pale. They think it's low because they took blood from him, and I think they're going to check it again tomorrow. If he shows any signs of it being low or if it drops, he'll have to have a transfusion. Which is why the IV is still in his foot. A transfusion can't go in the PICC, it has to go in an IV. So my hope is that I walk in to no IV in the morning!
I'm praying that Jaxson just has a urinary tract infection and nothing else. Those are tolerable and easily treated with antibiotics. Then I think we'd just have to get urology involved to decide if anything is to be done about his extra ureter.
Throughout the day I checked in on Facebook and revived countless comments and messages from friends and family. I also had several visitors today so that I wasn't alone at the hospital. The she amount of texts, messages and comments is truly overwhelming and I can't thank everyone enough for reaching out. Even if I haven't responded to you (patience, I'll get there!), please know that I received your note and I appreciate it more than you know.
On a brighter note, after a very rough start to the week of Sara, they've discovered that she had a bleeding ulcer. She had an endoscopy tonight and they found a bleeding ulcer that exposed an artery. They clipped off the artery and are pretty sure that should fix the problem. They are hopeful that they'll be able to start her blood thinners back up tomorrow afternoon. Thank God for small favors!
And now it's time to move my other monster from my bed to his so I can get some rest myself.
Complications
I should have listened to Jayson last night. He told me to come to the hospital because I was missing Jaxson and I told him I would spend the night if I left right then. He told me it was fine, but I decided I wanted to sleep in my bed. I should have come. Jaxson's heart rate went up into the 200s this morning which caused them to check his temperature. It was over 102.
So when I walked in over two hours ago, there were three nurses working on him. They've blown several veins trying to get an IV in and trying to take blood for tests. The IV still isn't in, even after calling the IV team. They got his urine from a catheter for his urinalysis, and they've ordered a chest X-ray to look at his lungs. They'll also be doing a lumbar puncture to check for meningitis. They had to get clearance from neurosurgery for the lumbar puncture because of his spine issues. Neurosurgery said that they could do it if it was absolutely necessary and only with the aid of ultrasound. S at some point today they'll be taking Jaxson down to radiology to do that. The X-ray team will come to his room for that part.
For the next 48 hours (at least) we have to wear gowns, masks and gloves while we're in his room. So I can still hold him but I can't touch him or kiss him. I can't even be in his room while they're doing all of this stuff either. I know they're doing what's best for him, but to hear him cry and not be able to comfort him is killing me. And if he gets any sicker they're going to move him back upstairs where he'll get more attention.
Never again will I ignore my instincts. My heart was telling me to come check on my baby and I didn't do it. I could shoot myself in the foot.
Jayson is the most supportive husband a woman could ask for. He took Jeffrey to my parents house and is on his way back here with food. My dad is amazing for watching Jeffrey while he's got Lexi and dealing with the emotions of having a daughter in the ICU. I am so lucky to have such an amazing family. And friends who offer to watch Jeffrey if I need them to or offer to come sit with me so I'm not alone.
Right now I just need them to be done so I can comfort my baby. Hopefully they're close.
So when I walked in over two hours ago, there were three nurses working on him. They've blown several veins trying to get an IV in and trying to take blood for tests. The IV still isn't in, even after calling the IV team. They got his urine from a catheter for his urinalysis, and they've ordered a chest X-ray to look at his lungs. They'll also be doing a lumbar puncture to check for meningitis. They had to get clearance from neurosurgery for the lumbar puncture because of his spine issues. Neurosurgery said that they could do it if it was absolutely necessary and only with the aid of ultrasound. S at some point today they'll be taking Jaxson down to radiology to do that. The X-ray team will come to his room for that part.
For the next 48 hours (at least) we have to wear gowns, masks and gloves while we're in his room. So I can still hold him but I can't touch him or kiss him. I can't even be in his room while they're doing all of this stuff either. I know they're doing what's best for him, but to hear him cry and not be able to comfort him is killing me. And if he gets any sicker they're going to move him back upstairs where he'll get more attention.
Never again will I ignore my instincts. My heart was telling me to come check on my baby and I didn't do it. I could shoot myself in the foot.
Jayson is the most supportive husband a woman could ask for. He took Jeffrey to my parents house and is on his way back here with food. My dad is amazing for watching Jeffrey while he's got Lexi and dealing with the emotions of having a daughter in the ICU. I am so lucky to have such an amazing family. And friends who offer to watch Jeffrey if I need them to or offer to come sit with me so I'm not alone.
Right now I just need them to be done so I can comfort my baby. Hopefully they're close.
Monday, July 23, 2012
Missing a Piece of Me
I didn't get to go see Sara tonight. There was so much going on up there and she is on so much medication right now that I didn't want to bring Jeffrey. So that gave me a chance to chill out and begin to process some things. I also gave me a chance to clean a little, although not much since I'm still dealing with incision pain from my surgery.
Jeffrey must have sensed I was having a rough night because he pretty much chilled out. I had to yell at him a couple of times when he wasn't listening, but he's three so that's to be expected. He mostly sat with me on the couch, sat on my lap, or layed in bed with me. And that's when I realized that I really miss Jaxson. As I said in my earlier blog, I won't know more until tomorrow, but I know it's going to be at least two more weeks before my baby comes home. And likely it will be longer.
It's been almost three weeks and I only get to see him for a few hours a day. Don't get me wrong, I'm glad Jayson and I have this schedule worked out. It's been really helpful for Jeffrey and it makes me feel like I'm doing right by both of my kids. But at the same time, Jaxson just needs me more. I would stay at the hospital 24/7 if I didn't have Jeffrey. But I do, so I'm limited.
And all of this got me thinking about the day he was born and comparing it to the day Jeffrey was born. I didn't get to hold either of m kids right after they were born. With Jeffrey, I was numb from the neck down for an hour after my surgery. With Jaxson, they took him away to be stabilized and ready him for transfer. I didn't get that initial bond where they put your baby on your chest. At least with Jeffrey, I got to do that once I could move. And I got to nurse him that night too.
Jaxson has been removed from me from the start and it's really starting to wear on me. It's hard enough adding a child to a home that already has a child and trying to balance how life will work. Now throw in that second child not being at home and having to split your time between two places AND two kids. It's frustrating and heartbreaking. When I'm at the hospital, I feel like I should be home with Jeffrey. When I'm home, I feel like I should be with Jaxson. In reality, I should be with both of them at the same time. All the time. At my house, with my stuff, taking care of them at the same time. Instead, I'm facing the very real possibility that Jaxson will still be at Children's when I go back to work at the end of August.
And what about Jayson? I haven't gotten to see him for longer than five minutes at a time in weeks. I'd love to have some one on one time with my husband. Our relationship is so strong that I'm not concerned about the toll this is taking, but I still miss him. And we live together! But I need him to work and make money to help with our bills, so that's what he does. But it would sure be nice for he and I to get some alone time, even if it just means watching a movie on the couch.
If I could ask one thing from everyone that reads this, it would be to please pray that Jaxson gets to come home sooner rather than later. He needs to be able to breathe on his own and eat from a bottle before they'll let him leave. But I know that one he gets here everything will calm down so much, and we'll be able to manage things so much better. I just miss Jaxson so much! I want to be the one that picks him up whenever he cries, the one to feed him every three hours even though it means less sleep, the one to change his diapers whenever he needs it, the one who makes all of his little worries disappear at a touch. I need him probably more than he needs me right now. It's like a little piece of me is missing without him here. And I can't get it back until he comes home.
So, when you pray next time, please think of baby Jaxson. Whatever road lies ahead for him is nothing compared to how his family feels right now. We need him home!
Jeffrey must have sensed I was having a rough night because he pretty much chilled out. I had to yell at him a couple of times when he wasn't listening, but he's three so that's to be expected. He mostly sat with me on the couch, sat on my lap, or layed in bed with me. And that's when I realized that I really miss Jaxson. As I said in my earlier blog, I won't know more until tomorrow, but I know it's going to be at least two more weeks before my baby comes home. And likely it will be longer.
It's been almost three weeks and I only get to see him for a few hours a day. Don't get me wrong, I'm glad Jayson and I have this schedule worked out. It's been really helpful for Jeffrey and it makes me feel like I'm doing right by both of my kids. But at the same time, Jaxson just needs me more. I would stay at the hospital 24/7 if I didn't have Jeffrey. But I do, so I'm limited.
And all of this got me thinking about the day he was born and comparing it to the day Jeffrey was born. I didn't get to hold either of m kids right after they were born. With Jeffrey, I was numb from the neck down for an hour after my surgery. With Jaxson, they took him away to be stabilized and ready him for transfer. I didn't get that initial bond where they put your baby on your chest. At least with Jeffrey, I got to do that once I could move. And I got to nurse him that night too.
Jaxson has been removed from me from the start and it's really starting to wear on me. It's hard enough adding a child to a home that already has a child and trying to balance how life will work. Now throw in that second child not being at home and having to split your time between two places AND two kids. It's frustrating and heartbreaking. When I'm at the hospital, I feel like I should be home with Jeffrey. When I'm home, I feel like I should be with Jaxson. In reality, I should be with both of them at the same time. All the time. At my house, with my stuff, taking care of them at the same time. Instead, I'm facing the very real possibility that Jaxson will still be at Children's when I go back to work at the end of August.
And what about Jayson? I haven't gotten to see him for longer than five minutes at a time in weeks. I'd love to have some one on one time with my husband. Our relationship is so strong that I'm not concerned about the toll this is taking, but I still miss him. And we live together! But I need him to work and make money to help with our bills, so that's what he does. But it would sure be nice for he and I to get some alone time, even if it just means watching a movie on the couch.
If I could ask one thing from everyone that reads this, it would be to please pray that Jaxson gets to come home sooner rather than later. He needs to be able to breathe on his own and eat from a bottle before they'll let him leave. But I know that one he gets here everything will calm down so much, and we'll be able to manage things so much better. I just miss Jaxson so much! I want to be the one that picks him up whenever he cries, the one to feed him every three hours even though it means less sleep, the one to change his diapers whenever he needs it, the one who makes all of his little worries disappear at a touch. I need him probably more than he needs me right now. It's like a little piece of me is missing without him here. And I can't get it back until he comes home.
So, when you pray next time, please think of baby Jaxson. Whatever road lies ahead for him is nothing compared to how his family feels right now. We need him home!
Whole Family Update
Today's post is going to be a little different. I know this blog is supposed to be about Jaxson and how he's doing, but I have so many other things going on that I just need an outlet today. Before I get into the rest, Jaxson is doing fine. There's nothing new to report today, but I may have some changes to share tomorrow. He has a new neonatologist on his new floor, so she's going to get all of his information together and come up with a plan to get Jaxson home. We're still looking at AT LEAST two more weeks, but I'll know more tomorrow.
So I'm going to start at the beginning. And this dates back a few weeks, so bear with me. On June 28th, Sam was in a car accident. She was hit by a double-trailer semi while merging from one highway to another. Her car is basically totaled and she has concussion number 6 along with post-concussion syndrome. She's been ordered to drop her class, no coaching, limited driving, no working out, and extremely limited activity in general. Now, if you know my sister, you know that this is like putting me on bedrest. It's near the end of the world.
Mind you, this happened 6 days before Jaxson was born. And this is where it started. It comes in three's right? Well if you've been reading you already know part 2: Jaxson and his health issues on top of deciding to come a bit early. Nothing to add to part 2 that you don't already know.
Part 3: Sara. She was pregnant at the same time as me. She had it a little tougher than I did, at least physically. She got a kidne infection early in her pregnancy and she just couldn't kick it. So she was on antibiotics and pain meds for a long time. Plus, she had to take Lovenox shots for her clotting disorder and Progesterone to make sure she didn't have the baby early like she did with Lexi. She was uncomfortable, but handling it like a champ. Then, about a week after Jaxson was born, Sara was rushed to the ER with clots. In her arteries, not her veins. You've heard me say before that my family is notorious for stumping doctors, a la Jaxson, and this is another example. S they get some things under control and induce her so that she can be treated properly. Welcome to the world Ariella! Things start to look up, Sara is improving. Then Ariella goes to the NICU due to withdrawals from the pain meds the doctors had Sara on. Okay, it sucks but okay. There's talk over this past weekend of letting Sara come home today. Awesome! Except Sara's body has other ideas. Her hemoglobin plummets and they move her back to ICU yesterday and give her a blood transfusion. Today, her blood pressure plummets. It seems to be stabilizing now, but the doctors have no idea what's going on with her. They are clearly using trial and error to figure it out, which is so frustrating.
My whole family is coming apart. Thank God we're all so close so we can lean on each other, but there's so much going on with each person that it's impossible to lean on someone for everything. For instance, I got the news about Sara's blood pressure while I was at the hospital visiting Jaxson. I have to leave so Jayson can get to work and try to figure out how to get up to see my sister later. I go to give Jaxson one last cuddle and he just drops his head on my chest and conks out. I thought I was going to lose it. My little boy needs me and I had to force myself to put him down and come home because m other little boy needs me. And I don't even have time to process my feelings or think about how Jaxson is really doing today because I'm so worried about Sara. And my parents. And Lexi. And Sam.
Everything is so chaotic right now. I only have time to update this because Jeffrey is down for his nap and Jayson is at work. So all is quiet at my house and I have 30 seconds to think about me. My head hurts and my heart hurts. I feel like I'm being pulled in 5000 different directions and I don't know which is the right one. And I'm exhausted. Did I mention that I'm pumping every 3 hours for Jaxson? I don't get up at night, but I'm getting a maximum of 6 hours of sleep at once, and that's because my body wakes me up. On top of not eating right because until last night there was no food in our house. Every movement is like a chore. I'm sure my iron is low and I'm positive I'm not getting enough calories. I do make sure to stay hydrated, though. Water is easy to come by and usually doesn't cost anything.
I suppose that's it for today. I can't wrap my head around forming a coherent thought, so I need to take a power nap before Jeffrey wakes up. Hopefully that will wake me up too.
So I'm going to start at the beginning. And this dates back a few weeks, so bear with me. On June 28th, Sam was in a car accident. She was hit by a double-trailer semi while merging from one highway to another. Her car is basically totaled and she has concussion number 6 along with post-concussion syndrome. She's been ordered to drop her class, no coaching, limited driving, no working out, and extremely limited activity in general. Now, if you know my sister, you know that this is like putting me on bedrest. It's near the end of the world.
Mind you, this happened 6 days before Jaxson was born. And this is where it started. It comes in three's right? Well if you've been reading you already know part 2: Jaxson and his health issues on top of deciding to come a bit early. Nothing to add to part 2 that you don't already know.
Part 3: Sara. She was pregnant at the same time as me. She had it a little tougher than I did, at least physically. She got a kidne infection early in her pregnancy and she just couldn't kick it. So she was on antibiotics and pain meds for a long time. Plus, she had to take Lovenox shots for her clotting disorder and Progesterone to make sure she didn't have the baby early like she did with Lexi. She was uncomfortable, but handling it like a champ. Then, about a week after Jaxson was born, Sara was rushed to the ER with clots. In her arteries, not her veins. You've heard me say before that my family is notorious for stumping doctors, a la Jaxson, and this is another example. S they get some things under control and induce her so that she can be treated properly. Welcome to the world Ariella! Things start to look up, Sara is improving. Then Ariella goes to the NICU due to withdrawals from the pain meds the doctors had Sara on. Okay, it sucks but okay. There's talk over this past weekend of letting Sara come home today. Awesome! Except Sara's body has other ideas. Her hemoglobin plummets and they move her back to ICU yesterday and give her a blood transfusion. Today, her blood pressure plummets. It seems to be stabilizing now, but the doctors have no idea what's going on with her. They are clearly using trial and error to figure it out, which is so frustrating.
My whole family is coming apart. Thank God we're all so close so we can lean on each other, but there's so much going on with each person that it's impossible to lean on someone for everything. For instance, I got the news about Sara's blood pressure while I was at the hospital visiting Jaxson. I have to leave so Jayson can get to work and try to figure out how to get up to see my sister later. I go to give Jaxson one last cuddle and he just drops his head on my chest and conks out. I thought I was going to lose it. My little boy needs me and I had to force myself to put him down and come home because m other little boy needs me. And I don't even have time to process my feelings or think about how Jaxson is really doing today because I'm so worried about Sara. And my parents. And Lexi. And Sam.
Everything is so chaotic right now. I only have time to update this because Jeffrey is down for his nap and Jayson is at work. So all is quiet at my house and I have 30 seconds to think about me. My head hurts and my heart hurts. I feel like I'm being pulled in 5000 different directions and I don't know which is the right one. And I'm exhausted. Did I mention that I'm pumping every 3 hours for Jaxson? I don't get up at night, but I'm getting a maximum of 6 hours of sleep at once, and that's because my body wakes me up. On top of not eating right because until last night there was no food in our house. Every movement is like a chore. I'm sure my iron is low and I'm positive I'm not getting enough calories. I do make sure to stay hydrated, though. Water is easy to come by and usually doesn't cost anything.
I suppose that's it for today. I can't wrap my head around forming a coherent thought, so I need to take a power nap before Jeffrey wakes up. Hopefully that will wake me up too.
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