Surgery at CHOP

Our first post! I've been thinking about doing some sort of a blog for a while now, but wasn't sure I'd have the time. Lately though I've been finding that there's so much going on and I'm not sure who've I've told what to, so I thought this might help me keep everyone updated. I'll start the first post with our story about going to Children's Hospital of Philadelphia (CHOP). This is mostly copied from an e-mail I just sent to a friend.

Jack has another surgery coming up - I can hardly believe this is his 7th surgery. It's a long story...as it seems our whole life is! Jack had his adenoids out last January along with his tonsils. But they only took out part of his adenoids because kids with Treacher Collins Syndrome typically have a highly arched pallet and can develop a nasally speech pattern if you take out all of the adenoids. So after they took out his tonsils and part of his adenoids his sleep apnea had resolved for 2 or 3 months, but then it came back and was as bad as it was before. The docs in Boston started talking about doing a tracheostomy, which I just can't even think about doing. We knew that a jaw distraction could also be an option, so we went to CHOP last October to consult with the docs there. They said he would probably benefit from a jaw distraction and they set up this surgery to have a look at him under anesthesia. We had to wait until after the first of the year because we had to switch insurance plans - we were with Tuft's and they don't cover CHOP, so we switched to AETNA. The plan is to take out the rest of his adenoids, do a scope to look at his entire airway, do a CT scan to have a look at his jaw, and manually move his jaw forward with both the ENT and the jaw distraction doctor there to see if a jaw distraction would open his airway enough.

But in the meantime we discovered this nasal spray made by Hopkinton Drug that has pretty much resolved his sleep apnea (more on that in the next post). We are all finally sleeping through the night - hooray! But we weren't sure what to do about this surgery coming up. When we use the spray he has a perfect night, but when we stop using it he starts having sleep apnea again after a few days. The docs at CHOP still want us to come in for the sleep study and depending on the results of that we may or may not do the surgery. The sleep study is on Sunday night and the surgery is scheduled for Tuesday morning. We won't know if he's going to have the surgery until we see the surgeon on Tuesday right before the procedure. Talk about complicated, huh? Seems like that's our life right now. I really hope we get to start doing fun things really soon. I dream about going to Disney World, or vacationing in New Hampshire. My goal is that within the next year the medical stuff will be behind us (or at least firmly in the background) and we're able to just enjoy being a family together.