What Doesn't Kill You Makes You Stronger - Part 2
Craniosynostosis: "a birth defect in which one or more of the joints between the bones of your infant's skull close prematurely, before your infant's brain is fully formed."
I have been worried about this since Wes was about 3 months old and his head started becoming misshapen. For that matter, when he first started developing a ridge across his forehead, we went and saw his pediatrician just to have it checked out. At that time, they could still feel his fontanel so they weren't concerned about premature fusion. Since then, I've been asking about it at every appointment with his pediatrician and with his neurologist. I normally just accept what the doctors say (since they are experts after all) and move on but for whatever reason I just couldn't let this one go. Then for a while Wesley's head started looking better. The ridge was getting less obvious but his head was getting more oblong. Since most of the brain damage was in the back of his brain, we were told the combination of laying on his back and the lack of brain growth in that area may lead to his head flattening out in the back. Also I was assured that his lack of head growth (he has the head size of an average 1 month old) is because his brain is still recovering from it's initial injury so it isn't growing at this point. With all these reassurances that his abnormal head shapes were to be expected, I tried to let go of my fears of craniosynostosis. It's really hard to assume the best, however, when your worst fears have happened. That voice inside you that normally tells you when you're being unreasonable for thinking you may have the plague whenever you sneeze becomes harder and harder to believe once you have had the plague (or your baby nearly dies).
So despite my best efforts to lay my fears aside, I kept analyzing Wesley's head. He started getting another ridge forming along his forehead and I couldn't let it rest this time. I asked his neurologist about it yet again and finally this time she agreed to take some x-rays and setup an appointment with the neurosurgery nurse (although she told me that they were going to tell me he's fine). Well we got in that evening, July 3rd, for the x-rays (which was horrible because they had to pin Wes down and twist his head around to take them) and the technician told me they would be read within a few hours and any of Wesley's doctors would be able to see them at that point. Since it was late that day and the following day was a holiday I figured I wouldn't hear anything until Thursday. So I suppressed the the scared, paranoid person in me that really needed to have answers right now and decided to give the doctors plenty of time to call with the results (I really do try and understand that they have other patients who are just as important to their parents as Wesley is to me). So Friday rolls around and I still haven't heard anything so I called and left a message with the neurology nurse. That evening Wesley's neurologist calls me back and informs me that the x-rays did show his skull plates are prematurely fusing (oh and that she got the results Tuesday night but was trying to get a hold of the neurosurgeon before she called me back).
Once again this reinforces the scared, paranoid part of me and makes it more and more difficult to not become a hypochondriac. One of my friends (whose son also has a variety of medical issues) likened it to always second guessing if you locked the car or turned the lights off when you left the house. You always do those things without thinking about it but the one time you go back to check if you did or not and you didn't, it reinforces your worry every time after that. If it happened once, why is it so far fetched to think it might happen again. So even though most things do not go wrong with Wes, every time my fears come true I feel myself becoming more fearful and less rational.
Once the neurologist talked with the neurosurgeon, his office was supposed to call me and schedule and appointment. So... I waited and waited and tried my hardest to be patient. On Tuesday I called and talked to a nurse in the neurosurgery department and she said they were still waiting for the neurologist and neurosurgeon to make a plan. Finally yesterday I had enough and I called again and made them schedule an appointment in the craniofacial clinic. The nurse didn't really want to schedule an appointment without the neurologist sending orders but when I started crying (not on purpose mind you) she gave in and went ahead and got us in next week. Today I called back to the neurologist's office to make sure all the necessary communication happens before his actual appointment and they acted as if everything went smoothly and we were all set. Well at least he will be seen and cared for properly but it's frustrating when the administrative tasks don't work out as it seems they should. So next Wednesday we will see whether Wes needs a very invasive surgery to fix his skull (which all the research I've done says he probably will). I'm terrified for him to have to have surgery, especially of this caliber, but I want the absolute best treatments for him. I don't think the real possibility of cranial surgery has really sunk in yet.
I realize that posts like this might come off making our doctors sound really bad. Let me put a disclaimer on that: we really like Wesley's doctors. They had good reasons for thinking his skull was fine and they were probably right for quite a while (some kids are born with craniosynostosis and some develop it over time). Also they are really good at treating Wes and communicating with us during his appointments. Where I get frustrated is in their timeliness (and lack of a sense of urgency) in scheduling followup appointments and communicating test results with us. But if I have to choose where their weaknesses were to lie I guess this is the way I would have it. Although I don't enjoy being a pain and calling all the time to get followup, I can do that much easier than I could fight for medical treatments that I know considerably less about than they do.
So Wednesday we'll hopefully find out the next steps for Wes. I was really happy that Colby would be here to deal with all of this with me so I didn't have to be the "strong one" the whole time but unfortunately that's not how things worked out (more on that later).
.JPG)
I have been worried about this since Wes was about 3 months old and his head started becoming misshapen. For that matter, when he first started developing a ridge across his forehead, we went and saw his pediatrician just to have it checked out. At that time, they could still feel his fontanel so they weren't concerned about premature fusion. Since then, I've been asking about it at every appointment with his pediatrician and with his neurologist. I normally just accept what the doctors say (since they are experts after all) and move on but for whatever reason I just couldn't let this one go. Then for a while Wesley's head started looking better. The ridge was getting less obvious but his head was getting more oblong. Since most of the brain damage was in the back of his brain, we were told the combination of laying on his back and the lack of brain growth in that area may lead to his head flattening out in the back. Also I was assured that his lack of head growth (he has the head size of an average 1 month old) is because his brain is still recovering from it's initial injury so it isn't growing at this point. With all these reassurances that his abnormal head shapes were to be expected, I tried to let go of my fears of craniosynostosis. It's really hard to assume the best, however, when your worst fears have happened. That voice inside you that normally tells you when you're being unreasonable for thinking you may have the plague whenever you sneeze becomes harder and harder to believe once you have had the plague (or your baby nearly dies).
So despite my best efforts to lay my fears aside, I kept analyzing Wesley's head. He started getting another ridge forming along his forehead and I couldn't let it rest this time. I asked his neurologist about it yet again and finally this time she agreed to take some x-rays and setup an appointment with the neurosurgery nurse (although she told me that they were going to tell me he's fine). Well we got in that evening, July 3rd, for the x-rays (which was horrible because they had to pin Wes down and twist his head around to take them) and the technician told me they would be read within a few hours and any of Wesley's doctors would be able to see them at that point. Since it was late that day and the following day was a holiday I figured I wouldn't hear anything until Thursday. So I suppressed the the scared, paranoid person in me that really needed to have answers right now and decided to give the doctors plenty of time to call with the results (I really do try and understand that they have other patients who are just as important to their parents as Wesley is to me). So Friday rolls around and I still haven't heard anything so I called and left a message with the neurology nurse. That evening Wesley's neurologist calls me back and informs me that the x-rays did show his skull plates are prematurely fusing (oh and that she got the results Tuesday night but was trying to get a hold of the neurosurgeon before she called me back).
Once again this reinforces the scared, paranoid part of me and makes it more and more difficult to not become a hypochondriac. One of my friends (whose son also has a variety of medical issues) likened it to always second guessing if you locked the car or turned the lights off when you left the house. You always do those things without thinking about it but the one time you go back to check if you did or not and you didn't, it reinforces your worry every time after that. If it happened once, why is it so far fetched to think it might happen again. So even though most things do not go wrong with Wes, every time my fears come true I feel myself becoming more fearful and less rational.
Once the neurologist talked with the neurosurgeon, his office was supposed to call me and schedule and appointment. So... I waited and waited and tried my hardest to be patient. On Tuesday I called and talked to a nurse in the neurosurgery department and she said they were still waiting for the neurologist and neurosurgeon to make a plan. Finally yesterday I had enough and I called again and made them schedule an appointment in the craniofacial clinic. The nurse didn't really want to schedule an appointment without the neurologist sending orders but when I started crying (not on purpose mind you) she gave in and went ahead and got us in next week. Today I called back to the neurologist's office to make sure all the necessary communication happens before his actual appointment and they acted as if everything went smoothly and we were all set. Well at least he will be seen and cared for properly but it's frustrating when the administrative tasks don't work out as it seems they should. So next Wednesday we will see whether Wes needs a very invasive surgery to fix his skull (which all the research I've done says he probably will). I'm terrified for him to have to have surgery, especially of this caliber, but I want the absolute best treatments for him. I don't think the real possibility of cranial surgery has really sunk in yet.
I realize that posts like this might come off making our doctors sound really bad. Let me put a disclaimer on that: we really like Wesley's doctors. They had good reasons for thinking his skull was fine and they were probably right for quite a while (some kids are born with craniosynostosis and some develop it over time). Also they are really good at treating Wes and communicating with us during his appointments. Where I get frustrated is in their timeliness (and lack of a sense of urgency) in scheduling followup appointments and communicating test results with us. But if I have to choose where their weaknesses were to lie I guess this is the way I would have it. Although I don't enjoy being a pain and calling all the time to get followup, I can do that much easier than I could fight for medical treatments that I know considerably less about than they do.
So Wednesday we'll hopefully find out the next steps for Wes. I was really happy that Colby would be here to deal with all of this with me so I didn't have to be the "strong one" the whole time but unfortunately that's not how things worked out (more on that later).
.JPG)
Wes is getting much better at using his hands purposefully!
Comments
Post a Comment