Let's be clear

We are still celebratimg Emma's birthday.  But since today isn't actually her birthday, I will allow some discussion of her medical developments.

Yesterday Dr. Gault, Emma's pediatric sleep specialist, called and gave me his take on the results of the hellacious sleep study from Monday night.  Thank goodness he felt more positive than we did when we left Tuesday morning; if he had given me more bad news, I might would have just hurled the phone out the window.  Turns out that most kids are mouth breathers, but over time (with a mask), they can become nose breathers.  He wouldn't even hear of a discussion about a chin strap for at least another month.  They did get a little bit of data that showed that the machine helped Emma.  He had settings for us and told us that we would be contacted for Emma's very own machine.  The results, as skimpy as they were, were no better and no worse than he expected.  He fully expected Emma to not cooperate because she's a "peanut" (his favorite term for babies). Those are the mechanics.

Here's the emotional stuff: he told me he's worried about Emma.  Not any more worried than he already was, but just concerned.  He also said that Dr. Elidemir was worried (they had some sort of discussion about Emma the other day).  Like I said, not any more worried than they already were, but worried because they care about her.  Dr. Elidemir sees Emma monthly for Synagis shots to help protect her from RSV, and he has really enjoyed seeing her this winter.  It's so comforting to know that they care so much about our baby girl personally, not just professionally.

So this afternoon, a nurse from the home health care company came by and showed us how to use Emma's BiPAP machine.  It's different from a CPAP because a CPAP pushes air continuously at the same pressure.  A bi-level machine like Emma's pushes air with two pressures, one for the "inhale" and one to encourage her to exhale.  She exhales on her own, so she doesn't need a lot of help clearing the CO2 from her lungs.  Another encouraging bit of information today is that the nurse suggested that we just spend a week putting the mask on Emma without any air at all, just to help her get used to it.  She also suggested that we spend the next week just blowing air in her face from the tube to ger her used to having air blowing on her face.  She encouraged us to let the mask become her toy...then it won't seem like such a foreign object when she has to wear it, and she won't associate it negatively.  She did great wearing the mask for a little while today (after she got over 3 minutes of screaming), and she got a kick out of the air-blowing tube.

I still feel like I've been kicked in the gut over this apnea thing, but I've figured out how I have coped with all of the awful things that have happened to Emma in the last year.  Anytime I've gotten bad news, I get upset.  I mourn, I grieve.  And then I reach a point (hopefully sooner rather than later) that God blesses me with the ability to focus on today and tomorrow rather than the what-ifs of three months or six months down the road.  It's almost like I can shut off any of my thoughts about the future.  I know that sounds horribly unhealthy, but believe me, I could work myself into a full-blown panic attack at any given moment if I let my imagination run wild.  I know the long-term what-ifs; I just don't have to think about them every day.  The best we can do is worry about today, and that's exactly what Jesus expects of us because He is in charge of our future.  Hallelujah.

Ok, so here are some rather depressing pictures from the sleep study Monday night.  We didn't get to stay in the "plush" lab that I stayed in last time, and I just felt gross.  The floor was even sticky.  They shoved the pediatric sleep lab into 3 hospital rooms at the end of the hall of an abandoned wing of the hospital.  Yep, abandoned.  It was kinda creepy walking in; I felt like I was in a weird horror movie with the words to Hotel California in the back of my head (you can check out any time you like, but you can never leave....).  I'm sure they will renovate the wing at some point, but ick! in the meantime.

Last year's blog post:
Blog post from March 17, 2010