I was writing this REALLY long Facebook status when I decided it was sounding more like a blog post so I decided I would just update here! First a brief catch up for those of you who aren't my Facebook friends. If you just want to catch up on today's update, go down to the bold writing at the bottom. ;)
In January, Kennedy went to the Down syndrome clinic in Denver for her annual check up. I mentioned then that she has been having headaches occasionally that were bothering her at school. We had had her eyes checked and knew that wasn't the issue so they suggested a sleep study. In April she had that done and I noticed they hooked her up to oxygen in the middle of the night. While we were driving home from that appointment the next morning, the doctor from the sleep clinic called me and told me that Kennedy's oxygen levels were dropping down into the 70's while she was sleeping and that she had severe sleep apnea. With levels that low she could potentially have heart issues among other things. Thankfully she had her annual oncology check up scheduled in May and with that always comes an echocardiogram so we found out a couple weeks later that her heart (and her blood) are in excellent condition still. The doctor from the sleep clinic got us hooked up to a medical supply company and started Kennedy on night time oxygen that night. It was quite a process finding a device that would stay on her all night but we finally got something rigged so it stays on her (most of the time).
At her sleep study
With her nasal canula which NEVER stayed in
With her mask rigged through a hat... if nothing else, we're creative! haha
NEW INFO RIGHT HERE
In the meantime we've had a lot more appointments with ENT and pulmonology to try to figure out where to go from here. The common consensus is that her apnea is SEVERE and pulmonology suggested C-pap in addition to oxygen while ENT didn't think that would be enough and wanted to take out her lingual tonsils Kennedy had her facial tonsils taken out in August 2006 (who knew we had more than one set?!) and her ENT promised this would be an easier surgery. I sure hope so because that one was rough! Ugh! He pointed out that she also still has a hole in her ear drum that needs to be repaired and that he could do that at the same time. The good part about repairing the hole in her ear drum is of course, it will most likely fix her hearing loss in that ear. The good part about removing her lingual tonsils is that it will remove the need for c-pap and hopefully make her apnea a little better though it will probably NOT take away the need for oxygen. They may also do a scope while she is asleep to make sure there are no structural abnormalities with her esophagus that need to be addressed.
As always with Kennedy, there are some concerns. This will be her first surgery where she will have to be intubated since her spine fusion surgery and since the back of her neck looks like this: