Nov 5, 2010
Sleep Apnea
So Seth did a sleep study last month or so and it showed that he had mild sleep apnea. Our CF Dr., the one who ordered the test referred us to ENT to see what could be done and said that ENT would further explain the results to us but that it was nothing to be worried about in the mean time. So our ENT appointment was today and when Dr.Han looked at the results he explained that he did not have obstructive apnea, something that could be solved by a simple surgery such as nasal polyp removal, but he had central apnea which means that his brain is not telling him to breathe. This freaks me out to say the least. He then went on to tell me that he couldn't help and that he was going to refer me back to our CF dr. Needless to say I was mad and emotional and I tend to me a little rude and out-spoken when I'm in this state of mind.... so Dr. Han found a Dr that specialized in sleep studies and she talked to us about our options and we have decided to schedule another sleep study December 14 (Merry Christmas to us huh?!) to test him again and to have him fit for the CPAP. Uhg! He's already hooked up to his feeding tube atleast 10 hours a night and his vest and neb several hours a day ( on a "healthy" day). My family keeps reminding me how much anxiety I had about the feeding tube but how much I love it now and what a huge difference it has made and saying that this will more then likely be the same way...I get it but my goodness. I know they're right but today I'm in the mood to pout and complain, and as much as our family loves us nobody can really understand what it feels like to be so helpless, I just want my baby to be safe and healthy and that feels like it has been taken out of my hands. I want him to be able to stay the night with friends with out machines and go to the pool with out people talking about his tube or play sports without him feeling bad that he can't keep up. I'm mad at the world today, maybe tomorrow will be better.....
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2 comments:
I'm so sorry. I can't imagine trying strap something else onto my kid at night. I was feeling bad for Azer the other night because he tries hard not to roll over onto his tube at night. And I felt bad because he can't sleep all comfy like a normal kid.
I totally know how you feel though. I mean, I have to start Azer's last breathing treatment during the time when he's already hooked up to the pump, and I just stand back and look sometimes, and its just a mess of tubes!
I know there is alot on your plate Beck. I can't even begin to imagine how difficult all of this is to deal with. But just know that I am here for you if you need anything at all! We will learn how to use this new machine just like we did all the others, and hopefully Seth will be able to rest better and focus more and become the super smart doctor that discovers the cure! (Hey, it could happen)
Love,
Ta-Te
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