Monday, October 1, 2012

Inconclusive Results

I guess there are people in the world who are ok with blurry vision, fuzzy thinking, inconclusive results... I'm not one of them. I want to dive in and TRY things on to see how they look and feel. I want to get to the bottom of things.

Some aspects of PWS have been easier than others to get to the bottom of. Dean had two surgeries to get his man parts in the right place - done and done. His weight is off (either too high or too low) - we adjust his diet (I know that part won't always be so easy, but it is for now). Dean had trouble using utensils - found him a great fork and spoon that work well for him. Phew.

But our seeming dark-hole-that-has-no-bottom has been with sleep apnea. Recently, Dean went for his ninth sleep study to try the BiPAP and see how it went.

We met with the sleep doc today. The study was *better,* but they weren't able to find a combination that *fixed* the apnea. Boo. One pressure level did a decent job, so they figured upping it would do even more. Nope. Dean is part of the 1 in 10 (which is easy to believe since he's already a 1-in-15,000 kind of guy) whose apnea gets *worse* when the pressure is increased because their bodies rely on the machine to do more breathing for them. Considering how much Dean leans into physical and figurative support in general, it doesn't surprise me that his brain even does it while sleeping. :)

So, the plan was to come back for another study and try the pressure level that seemed to work the best during the last one. The theory is that as Dean's body adjusts to the machine and the pressure, it could start to work better and better. Of course, the doctor said the words, "another sleep study" and I started tearing up. Not because this is ruining anyone's life, but because the cumulative exhaustion that builds up from trying 4,526 ways to address a problem without any resolution... can sometimes feel like a lot. The difference between now and three years ago is that I can get tears in my eyes while talking about these things to the doctor and not just fall apart every single time. Progress. :)

Then I thought, if Dean's body could improve just by having more time with the machine, and the machine was at least doing *something,* why not take a crack at that now and not wait? I proposed my idea to the doc and he said he absolutely thought it was a reasonable solution. So hopefully in the next few days, we will (finally) get the BiPAP at home and begin using it for Dean every night. We'll come back to the doc in a month and he can take the data chip in the machine and download it to figure out what it's been doing in the last month. It can tell him if the machine was working properly, if there were any leaks with the mask, and how many apnea events occurred each hour of each night. Cool, huh?

So I'm looking forward to it. I feel optimistic that with the change in energy and restfulness we saw in Dean following just the one night he had BiPAP during the study, this could be a step in the right direction. Thankful for tools to help.


Maegan0514 said...

I sure hope they find what works for Dean sooner rather than later. That is just so frustrating. I thought Dean had a T&A done. Was that not the issue with his apnea?

Janet Gulley said...

I hear ya on the "frustrating things you have to fix, you know you will fix, but it is taking way to long to figure out the right combo!!!" Makes sense to me that if the bipap can help him get great sleep, maybe he gets stronger all the way around as well as training his body and then he doesn't need it anymore.

Ali Foley Shenk said...

Maegan, Dean had a T&A in hopes of fixing the apnea, but it didn't work. We had a sleep study done at Shands and Dean's sats were sucky... we found out the next day that he had pneumonia (hence the sucky sats). BUT, Dr. Wagner told us that Dean's apnea was insignificant, so we were good to go! We ended up switching sleep docs here in VA and so, just to check, we did another sleep study. Turned out that the reason Dean's apnea was "insignificant" in the Shands study was because he was never hitting too much deep sleep (because he was sick and sleeping badly), which is when he has his apnea episodes. So basically, the T&A didn't work. :/ For whatever reason, it got rid of his central apnea, but not the obstructive like it was supposed to. Hence the bipap.

Janet, the doc doesn't think that Dean will work his way out of the bipap, but we'll see. Never say never. :)

Janet Gulley said...

Ummm. I believe that often times our kids love to do the opposite of what is expected so .... Either way, glad there is a way for him to sleep well and safe. (so Momma can sleep well)

Lisa said...

I hope this helps Dean! Sounds like you and his doctor have a good line of communication, and mutual respect, which is always half the battle. Good job, mama!

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