Wednesday, June 25, 2014

Big Kennedy Medical Update

Hello friends!! :) 

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

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:

 They want to be really careful how they intubate her and what they use so they don't have to manipulate her neck too much. They also have to take her hypoglycemia into consideration and since she is now a "big kid" she will be slotted for a later surgery time so they are putting a plan in place to keep her blood sugar up since she will have to be NPO longer than she usually can go without food. She also still needs to be cleared by endocrinology for her thyroid because her last panel came back whacky (that's a technical term - "whacky"). I can't remember what number was off but they couldn't get her in until the end of July so ENT is going to try to get a consult with them tomorrow and get her either cleared or seen so she can be scheduled and healed before school starts. They are hoping to get this surgery done mid-July. Whew! Lord willing, she will only spend one night in the hospital and be right back home... of course they said that with her other tonsils too. *ahem* As soon as I have a surgery date, I will post again and I will try to do a post with pictures and stuff too. We've been having lots of lazy days and fun this summer! :)