Friday, August 14, 2009

Color Me Not Shocked

Unexpectedly on Tuesday Mass Eye and Ear had an extra spot for Penny to do her sleep study (we were slated for later in August). Since I took Penny to the GI that day - she didn't gain a single ounce in a month (still at 14lbs, 11.5 oz) - Husband was tagged with the overnight sleep study.

The result? Penny has sleep apnea. And...wait for it...her O2 desaturates when she is having an apnea event. Wikepedia says sleep apnea is when you have 5 or more episodes of apnea (10 second intervals between breaths) in an hour. She had an average of 28 per hour. To PROTECT HER BRAIN DEVELOPMENT (how f-ing scary is that?) we're going to keep her on O2 for now for sleeping. Too bad little chicky has figure out to flip out her nasal cannula during the night.

I scheduled an appointment for early September with the ENT to discuss the study - i.e., when are we going to yank those god damn adenoids. As one of my work friends asked - why the hell can't I just schedule a conference call to discuss. I'll bring Penny in and they'll weigh her and listen to her breathing. The ENT will ask me her history (again), look at her x-ray that shows giant adenoids, read the sleep study - all done after we get there of course and then have a 15 min conversation about what we should do which will then have to be scheduled.

The other interesting thing was that I got a call from BlueCross - a nurse who wanted to check in and see whether I wanted a case manager for "complex case management" - we both agreed that since all my doctors (thank you MGH!) are talking to each other it could wait.

The pulmonologist (who called with the study results) seemed excited and thinks an adenoidectomy will make a difference in her eating and O2 levels. Of course we have to repeat the sleep study once we do the adenoidectomy to confirm.

Also, Penny has now received 3 "stuffed" animals as treats from MGH/Mass Eye Ear. She might have quite a collection by the end of all this.

10 comments:

Susan D. said...

SO sorry that you are going through all of this, but it sounds like you know the problem and have a plan! Best of luck!

Susan said...

Awh..poor little Penny. Just from reading your blog it seems like a lot for this little one. And I'm with you, want her to gain some weight!!! I hope the process continues to speed forward to get her where she needs to be. Seems overwhelming dealing with so many doctors and insurance and work and another baby.....feel for ya.

LauraC said...

Poor thing! And how frustrating for you to not get some progress on this!

Nicole S. said...

is it my imagination or do things in the medical world seem to take forever? Not that I want to fuel your frustration (like you need that!) but I just feel for that little chiquita of yours!

PS - LOVE the hair. Ha!

Stacey said...

Finally some progress! A minor miracle. And with Penny shortly to cross the one year mark I hope they will let you schedule surgery for September.

A. said...

September? Can't you just get the ENT to schedule the darn surgery? Enough already!

I took Finn to see his ENT specialist about a week after calling for his appointment (first appointment, not even a follow up). We saw the doc on a Friday, and his surgery was done that Monday morning, 3 days later.

Penny is an existing patient, it's ridiculous that she can't get in sooner for a follow up with the ENT. If it were me, I'd push for something earlier, and surgery ASAP after the appt.

Nancy said...

Dang! That IS scary :(

What's the hold-up for the surgery? Sounds like they know they want to do it...does she have to be a certain age/weight before they do it?

jungletwins said...

I'm glad things are progressing, painfully slow as they may be, and that all Penny's docs are at MGH and speaking to each other. That, in itself, is a rare and wonderful thing. The whole process must be frustrating as heck though. Hang in there, you're on your way.

Lisa said...

Wow. I'm glad it sounds like there is an optimistic plan, but what a mess. I hope little Penny gets fixed up soon. I always get nervous whenever BCBS wants to assign a case manager. To me that seems more like someone to manage the costs not help with care.

jerseygirl77 said...

Well it sounds like you may be on the road to resolving these issues... But geez, how totally frustrating. I agree with Lisa though, a case manager is more likely to be a "cost manager" than a "care manager." Then again, I am highly cynical when it comes to anything with health insurance.