It's been a while
While Colby is waiting to restart the final phase of his training, he gets nightly phone privileges. It's great to get to talk to him again, although I think it will make the next 3 weeks a lot harder. I will blame my lack of blog posts on the fact that I am able to share about my day with Colby each night so I have less time and need to write blog entries. I fear that when he's back for good I may stop blogging all together. I really don't want that to happen so I will try to continue blogging for the same reasons I started blogging in the first place.
So here's the latest with us. After calling the neurosurgeon's office 3 times in one day, I finally got Wesley's CT scan report. It shows partial bicornonal craniosynostosis. Because he has a decreased brain volume and the sutures are only partially fused, the surgeons don't want to do anything right now. The plan is to see him again in October and probably do another CT scan at that point to see if there has been any progression. I really really hate the "wait and see" approach but I absolutely don't want to do unnessisary surgery either. However, it seems kind of crazy that we recognize something is wrong and have a way to fix it but yet we do nothing until it gets worse. I know it's all a balance of risk and reward that if his brain doesn't need open sutures to have room to grow than there is not a comparable amount of reward to justify the risk of the surgery. I still have hope that eventually his brain will need more room to grow and I would rather do surgery while his bones are softer than wait until he's 5 and the surgery is more difficult. I didn't really voice all of these concerns to the neurosurgeon because I didn't want to sound like the crazy parent who wants to put her son though an incredibly invasive surgery. 3 1/2 months is not an unreasonable amount of time to wait to follow up but I am still so nervous about all of this it's torturing me. Part of what's really bothering me is the lack of seriousness the surgeons had in regards to Wesley's case. I know they regularly see kids who have severe deformities but Wesley's case is different. His lack of brain growth (in my non-professional opinion) has prevented his head from getting the really misshapen and bulging look of most cranio-kids. Just because he looks cute on the outside doesn't mean there is not a problem going on inside. We haven't gotten a second opinion on anything so far but I think it might be worth it here if for nothing else than my peace of mind to have two separate sets of doctors tell me the same thing.
So here's the latest with us. After calling the neurosurgeon's office 3 times in one day, I finally got Wesley's CT scan report. It shows partial bicornonal craniosynostosis. Because he has a decreased brain volume and the sutures are only partially fused, the surgeons don't want to do anything right now. The plan is to see him again in October and probably do another CT scan at that point to see if there has been any progression. I really really hate the "wait and see" approach but I absolutely don't want to do unnessisary surgery either. However, it seems kind of crazy that we recognize something is wrong and have a way to fix it but yet we do nothing until it gets worse. I know it's all a balance of risk and reward that if his brain doesn't need open sutures to have room to grow than there is not a comparable amount of reward to justify the risk of the surgery. I still have hope that eventually his brain will need more room to grow and I would rather do surgery while his bones are softer than wait until he's 5 and the surgery is more difficult. I didn't really voice all of these concerns to the neurosurgeon because I didn't want to sound like the crazy parent who wants to put her son though an incredibly invasive surgery. 3 1/2 months is not an unreasonable amount of time to wait to follow up but I am still so nervous about all of this it's torturing me. Part of what's really bothering me is the lack of seriousness the surgeons had in regards to Wesley's case. I know they regularly see kids who have severe deformities but Wesley's case is different. His lack of brain growth (in my non-professional opinion) has prevented his head from getting the really misshapen and bulging look of most cranio-kids. Just because he looks cute on the outside doesn't mean there is not a problem going on inside. We haven't gotten a second opinion on anything so far but I think it might be worth it here if for nothing else than my peace of mind to have two separate sets of doctors tell me the same thing.
From my trip to Iowa to see the Karls. It was over 100 degrees out and humid. The poor kids were so hot!
Comments
Post a Comment