Thursday, June 17, 2010
Update on Chandler and Anna
While I'm sitting here and the three littlest are napping, I think I'll update everyone on Anna and Chandler's medical issues. Everyone keeps asking me for updates, so I figure this is a good place to put it. Anna goes in for a CT scan under anesthesia at the Riverton Hospital on Monday. She cannot breathe out of her nose and this is causing her particular trouble at night, as she clenches her mouth closed and doesn't get enough oxygen. It is getting worse and worse, and this past week she is acting very tired and grumpy most days, which tells me that she is working so hard to breathe at night that she isn't getting enough restful sleep. Her surgery is scheduled for July 12th, but at until we get the results of the CT scans, we won't know exactly what they will be doing. At the very least, she will be having her adnoids, and most likely tonsils, removed. But they are thinking that there is significant stenosis of her nasal passages, either due to a wall of bone or a wall of mucous. If it is mucous, they can clean it out pretty easily during surgery. If it is bone, the surgery becomes much more complex.
We took Chandler to see Dr. Yamashiro at Primary Childrens yesterday. He adjusted the prosthesis that Chandler has in his mouth and again examined the hole on the roof of his mouth that we have already tried to fix with 3 previous surgeries. The problem is that, after 16 surgeries, there is too much scar tissue in that area, and scar tissue does not stretch well. Each time they have tried to reapair the fistula (hole), it has failed, and as a result, Chandler still has food coming out of his nose when he eats. Dr. Sidiqi recommended just giving Chandler a 6 month break from surgery, but after seeing Dr. Yamashiro, and consulting again with Sidiqi, they're not thinking that's such a good idea anymore. They're really thinking that we need to get this repaired so that we can try to bone graft again before Chandler's permanant teeth begin to try and descend. Now they are saying that the best option looks like cutting the top front bone out and moving it back and reattaching it, and at the same time, taking more bone from his hip and grafting that into his clefts. Moving the bone back, they say, will give it a much better chance of healing, because it will eliminate the need for the tissue to stretch, thus giving it a much higher chance of healing. Then, 16 weeks later, once everything is finally in one piece, they will cut the bone again, and move it back to where it was to begin with. I hope that makes sense...it's difficult to explain. This will be a very difficult surgery and we are still trying to figure out what is best for our sweet little Chan Man. When Dr. Yamashiro was explaining this procedure, I felt the all too familiar feeling of being punched in the stomach. The thought of my little sweet boy laying on that operating table and having his mouth taken apart and put back together rips me apart. At the same time though, I know that our Father in Heaven has a plan for Chandler, and that, if we decide to go ahead with this surgery, he will be okay. Thank you for all your love and support. Chandler is an incredible kid, and he continues to teach us so much.