Tuesday, October 11, 2011

Progress, Perhaps

Still no pictures because I just haven't been in a picture-taking mood recently. But today had some points of hope: a good report from Cole's teacher, a great MOPs meeting, good time with the boys outside, and a talk with Dr. Miller.

Dr. Miller was out last week and spoke with me today about the results of Dean's bloodwork drawn last week. In short, she agrees with me that Dean's reflux could be back and might be royally screwing up the sleep studies and causing the apnea and desats. I've also been emailing with another pediatric pulmonologist (who we will be switching to after this last visit!) and he agrees that reflux could be the culprit. Dr. Miller said to me, "So, I want you to start Dean on Prevacid soon, like... today." I told her, "We started him on it last night." She laughed and said, "This is why you and I get along! I love it!" I appreciate a doctor who is so proactive in figuring out WHY the craziness is happening.

I told Dr. Miller that ever since the Dr. Yu made the recommendation to give Dean oxygen when he sleeps, we just felt like that couldn't be the real solution. I mean, it's a band-aid, but it's not entirely a solution. Dr. Miller said she agreed and that she felt there was more to it. I told her that I just wanted to make sure that I wasn't in denial about my own child's tough situation and she said, "Well, I can understand that, but I feel the same way as you and I'm rarely in denial about other people's children." Haha She cracks me up.

We also talked about how it seems that Dean might have a bit of central adrenal insufficiency going on. Apparently, if you don't treat this during times of illness (like the pneumonia and gazillion other infections Dean had this past spring/summer), the effects can extend beyond the time of illness. The lungs have a hard time bouncing back, as I understand, and so could result in more apnea and other sleep disturbances. So, we wouldn't treat Dean with steroids on a regular basis, but we absolutely would if he got sick again or had to undergo surgery.

We both laughed about the suggestion from the other pulmonologist to stop GH. No way. Dean's labs show that his GH dose is right where it should be, so we're going to keep it at 0.8 mg/day.

The other opportunity is to schedule our next visit to Florida sooner than later and do a sleep study with Dr. Wagner (the peds pulmonology/sleep doc down there, who is also very familiar with PWS) there. I am eager to see Dr. Miller again, but I'd obviously rather go under circumstances of wanting to than of having to. But we'll see.

So we're delaying possible adenoids/tonsils surgery for now and are giving the Prevacid a shot. She wants us to monitor Dean without oxygen these next few days and see if the desats improve. This makes me a little nervous, but she assured me that we're not playing around with Dean and are working on a good hypothesis here.

Thank you for all your support and prayers. Many people have asked what they can do to help, and I'm just really rarely sure of the answer to this. When I'm so at my wits' end and sleep-deprived, there's not much I can think about, anyway. But I appreciate the support. Please continue to pray that we can figure this out sooner than later!


Jennifer said...

I am definitely praying! Don't wonderful doctors make such a world of difference?

Candice said...

Wow, things sound pretty crazy. Hang in there! I will add you to my prayers tonight. Hugs!