A "just-in-case" prayer request

I know I have mentioned that Emma's swallowing problems are due to the Chiari II malformation (compression) of her cerebellum.  The plan is still on for decompression of this malformation sometime in the later spring.  Children with this malformation respond differently - if the Chiari actually causes problems, the kids are called symptomatic.  These symptoms can range from the most serious (episodes of severe central apnea where kids are completely unable to begin breathing on their own again) to mild (some swallowing and food texture issues that they generally grow out of).  Emma's issues have landed somewhere in the middle.

Recently, I have read about some other kids' experiences with symptomatic Chiari, and one thing that stood out to me is called breath-holding.  It's where kids sometimes stop breathing temporarily when they sleep (don't get it confused with sleep apnea - not really the same).  Sometimes these kids start breathing on their own again with no assistance, some kids sleep with oxygen (how, I don't know, but it prevents them from having apneic episodes), and some kids start breathing again, but the whole to-do wakes them up.  I have noticed in the past that Emma tends to...well, hold her breath.  It goes something like this:

Inhale.

Exhale.

Inhale.

Exhale.

Inhale.

















Exhalethentakeadeepbreath.

She doesn't do it all the time, but she's done it enough for me to notice it the last couple of months.

It wasn't until I read about breath-holding that it occurred to me that this could be what Emma is doing.  She's not on an apnea monitor, so we don't actually know if this qualifies as an apneic episode.  Apnea is one of the things Dr. Troup asked us to be on the lookout for.  I called him today and spoke with his new nurse (we will miss Vicki, but she's moving on to bigger things for her career).  His new nurse is NIKKI!  She was one of Emma's nurses in the PICU, and we simply love her.  She gave Emma her first tub bath.  It's so wonderful to have someone who knows Emma taking care of her.  When I said, "I may be paranoid, but I just wanted to check," Nikki replied, "Um, after what you've been through and everything Emma experienced in the PICU, you have every right to call."  How reassuring to know that even with a major staff change, Emma is still so well cared for.  I told Nikki that I didn't even know if it was enough to set off an apnea monitor, but she said it probably was because they're very sensitive.  Great.  ANYWAY.  Dr. Troup wanted to make sure Emma didn't have a nasty virus or flu (this can cause apnea in babies, even ones without spina bifida); next step: Dr. Gault.  I know nothing about Dr. Gault, except that Nikki said he's their referred sleep doctor, and he's a great person to have in our arsenal.  I should be getting a phone call from his office soon about testing Emma.  I sure hope he plans to come to our house at midnight, because that's about the only time he's guaranteed to find a sleeping Emma...CERTAINLY not during the day.  If Emma has to sleep in a hospital crib again, sooner than I anticipated...ok, can't go there.  One step at a time.

So I ask for your prayers - prayers that I'm being paranoid.  Isn't it funny the things we ask God?  God, please make me paranoid.  I would rather over-analyze than my child be sick.  Please let Emma's pauses actually be normal pauses in breathing.  I can't find enough information to tell me exactly how long a breath-holding breath lasts.

And lastly, Emma cried for the entire 45 minutes at therapy today, with me holding her, sitting with her, walking out of the gym completely, sitting behind her where she couldn't see me, etc.  You name it, we tried it.  She's just got a MAJOR attitude and doesn't want to work...and occupational therapy is just playing with toys!  After therapy was over and we were in the lobby, Emma was smiling and having a grand time.  So she and I casually walked back into the gym.  It took her about 4 seconds to look around before she started whimpering.  Emma loves being outside, and the therapists said that they do therapy outside in the spring and summer.  I've got news for them: we'll bundle that child up like an eskimo, and I'll drag every last one of them out there if it means we can actually get a real therapy session in.  Attitude.  Pure attitude.  We've got our hands full already.