It's been a long time since I've done a medical update on Kellsey... at least I feel like it has been! I just got a call from Kellsey's ENT who collaborated with Kellsey's pulmonologist (why is that word always showing up as misspelled?! I'm pretty sure it's right!!) after getting the results of her post-op sleep study. I love these two doctors! They actually led a session on sleep disorders in children with Down syndrome at the statewide convention in May, but I missed it because it was at the same time I was leading my session... it was one I really needed to attend though.
Anyway, Kellsey's apnea is still pretty bad, which is what I expected. However, before she was only showing Central Sleep Apnea and now she's showing Central and Obstructive Sleep Apnea, so her T&A may have actually made things worse instead of better! Awesome! There are a few different directions to go from here... he talked about C-Pap of course and also talked about more surgery (tongue surgery?!) as well as a g-tube due to her aspiration issues (and we talked more about her restrictions in the swimming pool due to her aspirating). He's going to talk more with her pulmonologist before Kellsey's appointment with both of them next week. He did agree that it would be pointless to do anything surgically before we moved, but he's going to talk to some doctors in Denver and set her up some appointments there and make sure she's in good hands. He knows some of the team there already so that makes me feel better!
So for now we are status quo... we need to be mindful of when she's in the pool that she's not drinking the pool water (in other words, she needs to stay in her boat) and we'll see next week if they put her on C-Pap, which may shoot my dreams out the window of her and Kennedy sharing a room in Colorado. Kennedy is grumpy if her sleep is interrupted! And then when we get to CO we'll figure out what needs to be done, if anything, further about her aspiration and apnea. We also need to get her anhidrosis officially diagnosed and dealt with. The poor girl has still never sweat a drop of sweat in the whole year and a half she has been with us, and with these 90 degree temps, she is NOT a happy girl! To top it off, most of the houses in Colorado have no A/C... and they are going to hit high 80's and low 90's next week, too! Oh yes, I've been watching!
Aspiration, Apnea, Anhidrosis... A A A. That reminds me of some children's book somewhere. :) Somehow it doesn't sound like a very exciting read. HA! I'll update again after Kellsey's appointment next week.
Wednesday, June 1, 2011
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13 comments:
Brian has a Cpap, and honestly I sleep better now that he has it.. it makes no noise at all, Kennedy wont even know its there or being used by Kellesy
Dr Hickey with the Sie Center at Children's is awesome! You should definitely bring the girls to see him.
Yikes, scary stuff! I will say that I know the tongue surgery is extremely painful, and they recommend getting many second opinions before proceeding with it. Our little friend Carter almost had it, until his momma took him to a couple other doctors, and they figured out how to avoid it. Hopefully the c-pap works, and she tolerates it ok!
Don't count them out on sharing a room just yet. A C-pap is actually quieter than a humidifier and the person using it sleeps so much more soundly (since their apnea is no longer ruining their sleep), that any snoring, moving and getting up that may have otherwise disturbed others is gone (or at least significantly better).
Good to hear that your doctor's have connections in CO and are able to discuss her issues. That will make the transition so much easier so hopefully you don't have to go through more testing or anything. And there's this thing called window a/c's that you can get in CO, lol. Most places here in CT don't have a/c. We are in the upper 80's most of this week and I actually don't have our a/c's in yet. And we live in the 3rd floor. Needless to say, it's hot. The good news about CO is it's a dry heat.
Just wondering if the altitude (why doesn't that look right) in CO. will make any difference. Definately a difference. Just wondering.
Nancy
You can get a swamp cooler for you house in Colorado if it doesn't already have one. Because the humidity is so low there, the swamp cooler blows cool air over a moist surface (unlike air conditioners that dehumidify). They are fabulous! My friend had a smallish swamp cooler and it cooled her whole house when needed.
If the house doesnt have central air it will have a swamp cooler. I have lived in CO my whole life and I believe if you are renting the house has to be habitable and if its 90 degrees inside that would be against code so you will have some sort of cooling but it definitely gets hot here. We have a swamp and as long as you use it right you will be good but outside is a different beast. Poor thing hopefully they can get it figured out.
Swamp coolers are the thing in CO, but you'll see more a/c than you think you will.
4th generation Coloradan.
Hey Renee:
Roy wears a Bipap and I use a Cpap. Those machines are super quiet and you can only hear them if the mask comes of the face. Then you would hear rushing air. The children's masks are tighter and have less of a chance of coming off and making the noise. So they might still be able to share a room.
Praying all goes well with her and the move for your family.
The Lord is with you right now, lifting you up, giving you strength! Always praying!
Isaiah 40:28-31 Hast thou not known? hast thou not heard, that the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary? there is no searching of his understanding. He giveth power to the faint; and to them that have no might he increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
Prayer Bears
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I hope the C-pap does the trick for her apnea! Have you looked into vital stim to help Kellsey with her aspiration? We chatted about it on FB. I know your move is soon, so it may be something to ask the doctors about in Colorado. Let me know if you need me to get any info. :)
Natalie
I think it's great you are getting all lined up with some doctors in Colorado. Definitely see a cardiologist or pulmonologist if she is having issues since the altitude here is so much higher it can affect her.
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