Jaxson never does anything the easy way. It's go big or go home with this kid, every time. Most recently, we had to rush Jaxson to the ER. On August 17, Jaxson started to get fussy. Jayson as at work, but thankfully our friend Kelly was in town from Charlotte. Jaxson spiked a fever of 101.7 around 10:30pm. I brought him downstairs and gave him Tylenol, ear drops and gas drops, unsure of the cause. He decided to throw up his entire 3oz snack on me, two hours after he ate it. His fever broke and we cuddled up on the living room floor. He woke up again around 5am (mind you I had to stay awake to feed him at 12am) and had another high fever. I gave him more medicine and got him back to sleep. When he woke up the next morning, he was a different baby. Still not 100%, but definitely happier. We got him to take his food, working from a few ounces up to a normal feed, without getting sick. He slept most of the day, and started to heat up again, but we caught the temperature at 100 and he was fine. Thankfully, we got to go home the next day. And thanks to my parents, sister and niece, Jeffrey did not have to deal with his brother and one of his parents being out of the house for the night!
The following day, I had planned on going back to work. I was only going to go for a few hours because Jayson had to work (we'll get to that), and then someone was coming in to cover me. That is not how the day went at all. We knew as soon as Jeffrey got out of bed that he wasn't doing well. Fever of 101. Okay, fine, that's not horrible. We gave him some Tylenol and he perked up a little, but not all the way. Still, his fever dropped so I planned on going in. Three hours into his Tylenol, Jeffrey's fever skyrocketed to 103.7. I immediately called Jayson to come back (no idea where he was now) so we could take Jeffrey to the ER. My biggest concern was strep with the fever spiking under meds. Luckily it wasn't that, but they determined that he had gotten enterovirus from Jaxson. Awesome. So, home I stayed. Jeffrey ended up being pretty sick that day, but did much better the following day and is now back to his normal rotten self.
When I had to call off of work three days in a row, I spoke with my manager and we agreed. It was not fair to the bank for me to continue to call off work for emergencies, especially when they were really relying on me being there. So I ended up not going back at all. Jayson found a job pretty quickly and we've transitioned back into traditional roles. It's an adjustment for everyone, let me tell you. This is a whole new way of life for me. I've had a job since I was 15, so not working is weird. Jeffrey is all out of sorts. Between daddy being gone all the time now and starting school, it's no wonder that he had an upset stomach today. I kept him home and shortly after I called the school to let them know, he threw up on the blanket I had put down in case he needed to get sick. Now he's sleeping in my recliner. I just hope he feels better when he wakes up! Jayson is adjusting to working full-time again. After not working for over a year, he has done a good job of integrating himself back into the work force. I think Jaxson has had the easiest time with this change. Mommy is home all the time, he loves his schedule and basically sticks to it without a fuss, and he hasn't thrown up since he came home from the hospital. If you are new to this blog, Jaxson used to throw up after every feed. Every. Single. One. And we're not talking a little spit up, we're talking vomiting all over himself, the floor, and whoever happens to be holding him at such an inconvenient time. Thank goodness it appears that we're past that!
Adjusting to life as a stay at home mom has been both frustrating and rewarding. It's frustrating in that I am dealing with two young children every day who constantly battle my every decision. Jeffrey is testing his limits with mom, and he's quickly learning that mom has more will power than he does. There have been a lot of fits, many time outs, and even a few swats on the bottom. On the flip side, there has been relaxation, wrestling on the floor, watching movies and lots of laughter! Each day I learn something new about both of my boys, and each day they amaze me with what they are capable of doing on their own. They make me laugh with their quirky personalities and make me cry when I can't seem to get it right. And I love every second. I can personally keep an eye on Jaxson and make sure I get to all of his appointments without hassle. I can make sure that Jeffrey gets on and off the bus every day, and I can have a fun snack or surprise waiting for him when he gets home. I get to teach them, to play with them, to love on them and be loved by them every second of every day. I wouldn't change it for the world!
The next two weeks are going to be extremely busy and difficult to manage. Jaxson has five appointments next week alone, only one of which is at our house. We meet the new Neurosurgeon on the 3rd, Help Me Grow (home) on the 4th, PT and Speech on the 5th, and the dietician on the 6th. The following week is just as bad, on the 9th is audiology, the 10th he's supposed to go to school, the 12th is PT and the 13th is his EEG. Then we get a five day break until his surgery on the 18th, and we haven't found out how long he's going to be there yet. After surgery, we're clear of appointments for awhile. I say awhile, what I mean is two weeks! But hopefully we'll start getting some answers soon.
So in this thing called life, we are doing well overall. Everyone seems more relaxed and ready to do what needs done. It's good for Jayson to have the distraction of work every day, and it's good for me to be with the boys every day. I think we made the right decision, so hopefully we don't get bit in the butt later!
Also, you may have noticed the links under the "Pages" section growing. Because Jaxson does not have a diagnosis, I have decided to put up links to the different things he has going on in his body. At least the ones I could find that would be helpful to anyone not familiar with the situation. I also have added some Facebook pages for a couple of people, as well as links to a few foundations that are close to me. Each link under the Pages section will take you directly to that particular website. This will be updated as we gain more information and as I have more time to fool around with blogspot and see what capabilities it has.
Now that it's four days after I started this silly thing, I'm finally done. Jaxson did very well at PT this morning and we're headed in for a follow up vision check. Crossies that I'm wrong about his strabismus!
~S
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
Thursday, August 29, 2013
Thursday, August 15, 2013
Surgeries: Round 2
First, I want to apologize to everyone who relies on this blog for updates. I know it's been two months since my last post, and there's a lot of information to put out here today. I will try to update more frequently as Jaxson has appointments!
On July 9, Jaxson had an MRI on his spine and skull and a 3D image of his skull. The next day, which was a Wednesday, I was pretty sick and decided to stay home. Best decision I could have made. I received a call that afternoon from the Nuerosurgery departments asking if we could come in the following morning (Thursday) at 5:45am for a brain MRI. I was so shocked I could hardly get out my questions. I asked what they were looking for and was told that the radiologist thought there might be fluid on his brain. If they found that to be correct, they already had a spot for Jaxson in the OR for Friday for a shunt. So we went to the MRI the next day and Dr. Jackson came to speak with us after everything was completed. Jaxson wasn't even in the room from recovery yet. Dr. Jackson (whom we love and were super sad to see leave Children's for Johns Hopkins) informed us that Jaxson did indeed have fluid on his brain. However, they did not think there was any pressure being placed on his brain and rather than place the shunt, they had us take Jaxson to the eye doctor so they could check his optic nerves for pressure. Thankfully they didn't see enough to warrant a shunt. But Dr. Jackson said there were more things we needed to know. Jaxson's lambdoid sutures (back of the skull) were fused. His sagittal suture was fusing. He would need at least one additional surgery on his head, possibly more. He was given a partial diagnosis of syndromic synostosis and we were to meet with the plastic surgeon the following week. He also needs more spin surgery. They will do another scan in a few months to determine the next course of action for that, but it looks like he may have an issue all the way up his spine. There is also the potential that he has a chiri malformation, although that won't be certain until the next surgery is done and they can see if the surgery gives his brain more room to expand.
Jaxson was supposed to have his cleft palate repaired on July 29, but it has now been postponed. He will have distraction surgery (http://www.medscape.com/viewarticle/405635_2) on September 18, my dad's birthday. I'm not sure how long he'll be in the hospital for that one, but probably a week. This procedure is actually 2 surgeries because they have to go in and remove the device, and when they do that, they will likely fix the cleft. In a nutshell, rather than unfusing the bones and expanding them (what they did with his coronal sutures last year), they will make a horizontal cut across the back of Jaxsons skull. They will put in a device that will help expand his skull at a slower pace. This is the best option for him because the back of his head is flat and there isn't much skin to advance the bones the same way they did before. The downside is that he'll have knobs on the outside of his head. We'll have to turn them every day in order to create more space and allow the skin on his skull to recover and expand at a much slower pace. The hope is that by doing this, they won't have to operate on the sagittal sutures and that the space created will give his brain enough room to grow, relieve the fluid in his brain, and make the apparent chiri malformation go away. Only time will tell what the outcome will be. The "wait and see" game is the story of our lives right now.
So that's two surgeries we weren't prepared for, although it's nice that they can combine the second surgery with fixing his cleft. Then we'll have to address the spine, and who knows what that will be like. He'll need at least one surgery on that, possibly more if they don't get the problem completely solved. What has me worried about his spine is that the initial tethering was caused by scar tissue. There's only so much you can do to remove scar tissue without impacting the areas around it, so it's possible that they will not be able to fix it completely.
Round 2 has begun. Each surgery has to be at least 3 months apart from the previous surgery, so at this point we're looking at another year's worth of surgeries. On top of his regular appointments, which now include a visit to the eye doctor every few months and speech therapy. Oh, and I forgot that he'll have to see Physical Medicine and Neurology now too. He may need braces on his feet to correct the positioning for walking, an he's still doing that shaking thing, although not as often.
This sudden turn has taken a huge toll on our family. Jayson and my anxiety levels are through the roof, stress is high, and because my pay was screwed up for two months, money is hard to come by. Jayson and I are working on switching out because he can handle working full-time and I can't. I need to be home with my baby. It won't be an easy transition for anyone, but it's something that has to be done.
Amid all of this, I have had several people ask why I don't just go back to full-time at the bank, stating that sometimes sacrifices have to be made. If one more person talks to me about sacrifices, I might go through the roof. This is something I have to get off my chest, and is not directed at any one person. You want to talk sacrifice? Sacrifice is returning to work from maternity leave while your son is having a feeding tube placed. Sacrifice is not being able to go on a date with your husband for over a year because no one can watch your child. Sacrifice is sleeping an average of four hours a night in 30-45 minute intervals for a year and still managing to go to work every day and help take care of the kids when you get home. Sacrifice is giving up part of your manhood to stay home with the kids because your wife makes more money than you do. Sacrifice is moving to the inner-city because it's cheaper, even though it's not safe. Sacrifice is risking your job because you're so concerned about your child's well-being. No one, no one can possibly understand all of the sacrifices Jayson and I have made over the last 18 months (including while I was pregnant) in order to make sure our children have a decent life. Sacrifice is skipping meals or eating very small portions to make sure that your child can eat when he's hungry. Sacrifice is knowing that when all is said and done, your credit will be in the toilet because of medical bills that can't be paid, and shrugging it off because there are worse things in life than not owning your home or being able to get a credit card. Sacrifice is leaving your child in the hands of someone else, praying that he'll come back to you the way he's supposed to. I have a couple of friends who might have an inkling because of their own children, but until you have a child with medical disabilities that has to have multiple surgeries in a year's time, do not come at me with sacrifices. We have done everything in our power to maintain a "normal" family life for our children, and it has cost us. Not just monetarily, but emotionally and mentally. We are good parents who have fallen on hard times. But we will NOT let that get in the way of raising our children properly.
On a lighter and happier note, both Jaxson and Jeffrey will be going to the Head Start school this fall. They will be picked up and dropped off every afternoon. Jaxson will get therapy while he is there, on top of the therapies we do at Children's. Jeffrey will get the social interaction and education he so desperately needs and wants. If either of us are home with the kids at that time, that person will get at least a 4 hour break every day to get things done around the house and not have kids in the way as a distraction. And it will only cost us $100 a month. Can't beat that!
Our lives are in a constant state of chaos. It's always a waiting game with Jaxson. Waiting to see what this next surgery will bring, waiting to see what doctor is going to throw something in our lap next, waiting on his next round of appointments. And there's always financial stress. Because my pay was messed up due to my leave, we will not get SSI for Jaxson this month or next. We count on that money to pay our rent, so now we are saving every penny we can find while still putting food on the table for the kids. We can handle it. We will get through it. We always do. And while J and I have argued more recently (we almost never fight and it's always been that way), our relationship is as strong as ever.
The Burks' and the Sanderson's are fighters, and Jaxson exhibits every ounce of defiance he can. He is not going down without a fight, and he's happy to accept the challenge. His smile and laughter are what get me through most days, along with the random, "I love you Mommy" comments and requests for hugs and kisses from Jeffrey. I live for those moments, which are often in this house. Jayson and I must be doing something right to have two happy kids who seem to not have a care in the world. In that aspect, we have done a great job not showing the kids how hard this is for us. And we really can't ask for more than that, because that is what life is all about. No matter what the situation, if your kids are happy with a roof over their heads and food on the table, everything else is minute.
I will end this long blog with a line from a Nickelback song. I'm not a huge fan, but I like this line: "My best friend gave me the best advice/He said, 'Each day's a privilege and not a given right.'" So true. So make the best of it today. Give someone a hand, hold the door open, smile at people you pass on the street. You'll be surprised with how good you feel at the end of the day, and the impact you have on the people you encounter may never be known. You could be the person to turn someone's day around, or even their life.
-S
-"Life is not what it's supposed to be, it is what it is. The way you cope with it is what makes the difference."
On July 9, Jaxson had an MRI on his spine and skull and a 3D image of his skull. The next day, which was a Wednesday, I was pretty sick and decided to stay home. Best decision I could have made. I received a call that afternoon from the Nuerosurgery departments asking if we could come in the following morning (Thursday) at 5:45am for a brain MRI. I was so shocked I could hardly get out my questions. I asked what they were looking for and was told that the radiologist thought there might be fluid on his brain. If they found that to be correct, they already had a spot for Jaxson in the OR for Friday for a shunt. So we went to the MRI the next day and Dr. Jackson came to speak with us after everything was completed. Jaxson wasn't even in the room from recovery yet. Dr. Jackson (whom we love and were super sad to see leave Children's for Johns Hopkins) informed us that Jaxson did indeed have fluid on his brain. However, they did not think there was any pressure being placed on his brain and rather than place the shunt, they had us take Jaxson to the eye doctor so they could check his optic nerves for pressure. Thankfully they didn't see enough to warrant a shunt. But Dr. Jackson said there were more things we needed to know. Jaxson's lambdoid sutures (back of the skull) were fused. His sagittal suture was fusing. He would need at least one additional surgery on his head, possibly more. He was given a partial diagnosis of syndromic synostosis and we were to meet with the plastic surgeon the following week. He also needs more spin surgery. They will do another scan in a few months to determine the next course of action for that, but it looks like he may have an issue all the way up his spine. There is also the potential that he has a chiri malformation, although that won't be certain until the next surgery is done and they can see if the surgery gives his brain more room to expand.
Jaxson was supposed to have his cleft palate repaired on July 29, but it has now been postponed. He will have distraction surgery (http://www.medscape.com/viewarticle/405635_2) on September 18, my dad's birthday. I'm not sure how long he'll be in the hospital for that one, but probably a week. This procedure is actually 2 surgeries because they have to go in and remove the device, and when they do that, they will likely fix the cleft. In a nutshell, rather than unfusing the bones and expanding them (what they did with his coronal sutures last year), they will make a horizontal cut across the back of Jaxsons skull. They will put in a device that will help expand his skull at a slower pace. This is the best option for him because the back of his head is flat and there isn't much skin to advance the bones the same way they did before. The downside is that he'll have knobs on the outside of his head. We'll have to turn them every day in order to create more space and allow the skin on his skull to recover and expand at a much slower pace. The hope is that by doing this, they won't have to operate on the sagittal sutures and that the space created will give his brain enough room to grow, relieve the fluid in his brain, and make the apparent chiri malformation go away. Only time will tell what the outcome will be. The "wait and see" game is the story of our lives right now.
So that's two surgeries we weren't prepared for, although it's nice that they can combine the second surgery with fixing his cleft. Then we'll have to address the spine, and who knows what that will be like. He'll need at least one surgery on that, possibly more if they don't get the problem completely solved. What has me worried about his spine is that the initial tethering was caused by scar tissue. There's only so much you can do to remove scar tissue without impacting the areas around it, so it's possible that they will not be able to fix it completely.
Round 2 has begun. Each surgery has to be at least 3 months apart from the previous surgery, so at this point we're looking at another year's worth of surgeries. On top of his regular appointments, which now include a visit to the eye doctor every few months and speech therapy. Oh, and I forgot that he'll have to see Physical Medicine and Neurology now too. He may need braces on his feet to correct the positioning for walking, an he's still doing that shaking thing, although not as often.
This sudden turn has taken a huge toll on our family. Jayson and my anxiety levels are through the roof, stress is high, and because my pay was screwed up for two months, money is hard to come by. Jayson and I are working on switching out because he can handle working full-time and I can't. I need to be home with my baby. It won't be an easy transition for anyone, but it's something that has to be done.
Amid all of this, I have had several people ask why I don't just go back to full-time at the bank, stating that sometimes sacrifices have to be made. If one more person talks to me about sacrifices, I might go through the roof. This is something I have to get off my chest, and is not directed at any one person. You want to talk sacrifice? Sacrifice is returning to work from maternity leave while your son is having a feeding tube placed. Sacrifice is not being able to go on a date with your husband for over a year because no one can watch your child. Sacrifice is sleeping an average of four hours a night in 30-45 minute intervals for a year and still managing to go to work every day and help take care of the kids when you get home. Sacrifice is giving up part of your manhood to stay home with the kids because your wife makes more money than you do. Sacrifice is moving to the inner-city because it's cheaper, even though it's not safe. Sacrifice is risking your job because you're so concerned about your child's well-being. No one, no one can possibly understand all of the sacrifices Jayson and I have made over the last 18 months (including while I was pregnant) in order to make sure our children have a decent life. Sacrifice is skipping meals or eating very small portions to make sure that your child can eat when he's hungry. Sacrifice is knowing that when all is said and done, your credit will be in the toilet because of medical bills that can't be paid, and shrugging it off because there are worse things in life than not owning your home or being able to get a credit card. Sacrifice is leaving your child in the hands of someone else, praying that he'll come back to you the way he's supposed to. I have a couple of friends who might have an inkling because of their own children, but until you have a child with medical disabilities that has to have multiple surgeries in a year's time, do not come at me with sacrifices. We have done everything in our power to maintain a "normal" family life for our children, and it has cost us. Not just monetarily, but emotionally and mentally. We are good parents who have fallen on hard times. But we will NOT let that get in the way of raising our children properly.
On a lighter and happier note, both Jaxson and Jeffrey will be going to the Head Start school this fall. They will be picked up and dropped off every afternoon. Jaxson will get therapy while he is there, on top of the therapies we do at Children's. Jeffrey will get the social interaction and education he so desperately needs and wants. If either of us are home with the kids at that time, that person will get at least a 4 hour break every day to get things done around the house and not have kids in the way as a distraction. And it will only cost us $100 a month. Can't beat that!
Our lives are in a constant state of chaos. It's always a waiting game with Jaxson. Waiting to see what this next surgery will bring, waiting to see what doctor is going to throw something in our lap next, waiting on his next round of appointments. And there's always financial stress. Because my pay was messed up due to my leave, we will not get SSI for Jaxson this month or next. We count on that money to pay our rent, so now we are saving every penny we can find while still putting food on the table for the kids. We can handle it. We will get through it. We always do. And while J and I have argued more recently (we almost never fight and it's always been that way), our relationship is as strong as ever.
The Burks' and the Sanderson's are fighters, and Jaxson exhibits every ounce of defiance he can. He is not going down without a fight, and he's happy to accept the challenge. His smile and laughter are what get me through most days, along with the random, "I love you Mommy" comments and requests for hugs and kisses from Jeffrey. I live for those moments, which are often in this house. Jayson and I must be doing something right to have two happy kids who seem to not have a care in the world. In that aspect, we have done a great job not showing the kids how hard this is for us. And we really can't ask for more than that, because that is what life is all about. No matter what the situation, if your kids are happy with a roof over their heads and food on the table, everything else is minute.
I will end this long blog with a line from a Nickelback song. I'm not a huge fan, but I like this line: "My best friend gave me the best advice/He said, 'Each day's a privilege and not a given right.'" So true. So make the best of it today. Give someone a hand, hold the door open, smile at people you pass on the street. You'll be surprised with how good you feel at the end of the day, and the impact you have on the people you encounter may never be known. You could be the person to turn someone's day around, or even their life.
-S
-"Life is not what it's supposed to be, it is what it is. The way you cope with it is what makes the difference."
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