Wednesday, October 5, 2011

Pulmonology and No Answers

Today we went to Charlottesville (sorry, Cville friends! We were barely there for long at all) to see Dr. Yu, Dean's pulmonologist. This was to review his not-so-great-at-all sleep study from a few weeks ago. Props to my friend Elizabeth for taking Cole while I went with Dean and Emmett (who is still nursing and not taking a bottle).

Bottom line is, she doesn't know why what is happening to Dean in his sleep is happening. She's never seen this combination of events before. REALLY, this is not the first time that a doctor has said that some aspect of Dean's being affected by PWS is something they haven't seen before. I'm all set with being a trailblazer in this way.

The central apnea is actually worse than is the obstructive apnea, so even if we were to get Dean's tonsils and adenoids out, it shouldn't make a difference with the central apnea. That said, this syndrome is so freaking weird that I wouldn't be surprised with much of anything. We're seeing ENT on Friday and I'm just actually HOPING there are giant adenoids in Dean's throat so that we can have the surgery and therefore an explanation for all this.

The bigger concern than even the apnea is the desating. Dean's oxygen sats are dipping low and frequently, and this is really not good. She said that Dean needs to be on oxygen every night while he is sleeping. :( At this, I felt like throwing up. It feels like admitting defeat to this crazy syndrome. EVERY night. I'm still getting over the annoyance of dealing with Dean's feeding tube, and that was a year and a half ago. How do you go to a sleepover at a friend's house with your oxygen? Or go on a quick trip somewhere overnight? Or even have someone babysit with the instructions to slip on the cannula for his afternoon nap? It all just feels so confining.

So Dean is sleeping right now and he is not on oxygen. Before you throw bricks at me, hear me out. The sleep study showed that Dean's respiratory events are all happening only when he's on his back. This makes no sense for the central apnea, but it is what it is. Props to my friend Elizabeth (a different one :)) who sewed a pocket into a PJ shirt for Dean. We put a tennis ball in it and it prevents Dean from sleeping on his back. So we're conducting our own experiment while Dean is hooked up to the pulse oximeter and are seeing what is happening. If he still desats, then somehow we will figure out how to get this cannula on him. Previous attempts have involved screaming, wrestling, and flailing. No good. :(

Here are some shots of the shirt with the tennis ball in it. Dean doesn't mind it at all.

I suggested that these sleep issues also started up around the same time that Dean suddenly started getting so sick. Dr. Yu thought that was an interesting observation, but still doesn't know exactly what that means. I'm still wondering if it's an adenoids thing.

The other x factor is that between Dean's last good sleep study in September 2010 and his first poor one in May 2011, we increased his GH. Dr. Yu was wondering about the possibility of that increase tipping off a few things. I chatted with Dr. Miller and we got a bunch of bloodwork done on Monday (holy crazy amount of blood needed!) to see what is going on on several fronts with Dean. Dr. Yu suggested going off GH and seeing what happens, but I said that was a real last resort. We're thinking about decreasing his dose to what it was in Sept 2010 and seeing if that helps, too. So many options. Can someone just make decisions for me?

I hate this syndrome. I hate that my son has to go through all this craziness. I hate that things have to be so complicated. But I am trusting that there is a greater redemptive story in all this. Because there has to be. And because God says there is. We covet your prayers.


Kevin said...

Ann was a snorer. When you were wondering what the chemo was doing, it ended up being a very comforting sound at night. After that adventure, she had her tonsils and adenoids out. The doctor said the adenoids were huge, like some of the largest he had seen. So big adenoids might be in the genes. Can someone get a look at them before the decision to have surgery is made? It took awhile for Laura and I to learn how to sleep in the quiet of the night.

Ali Foley Shenk said...

Yeah, I'm going to ask the ENT to scope him on Friday to check his adenoids. If they're not big, I don't know what we're going to do about the surgery. We might try other things first.

The Saunderses said...

Praying for you and Sweet Dean as you make decisions.

CMG's Mom said...

Prayers it is. And answers would be good too, but I can't help there. Prayers I can do.

Katie said...

Ali, We'll be praying for God to give you and Bob wisdom for the decisions you are facing. I have my prayer group praying for Dean so we are expecting great things for him. I worked for Sarah Foley after her car accident. Grandma

horace said...

Hey - I am sorry to hear about oxygen everynight. That is a major concern and hassle. Of course you are willing to do it, but it is so annoying that you have to. For what its worth, I found oxygen SO MUCH easier to manage than the feeding tube, but it is hard to keep it on and the tape rips up their little faces...we will pray for you too. I hope the surgery is helpful and resolves the desats, apnea, etc.