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.
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