Kintropy In Action

Lost track of which night this is.  Daytimes for Hannah are still pretty good.  Nights are awful.  One of our most experienced nurses (and one of Hannah's favorites) believes Hannah will get the hang of night breathing.  I confess I have my doubts at the moment.

I've just finished working with Hannah for three hours tonight.  Maybe it's my twenty-plus year bout with severe asthma when younger, but watching Hannah struggle to figure out how to breathe is stressing me out.  I find it difficult to sit there, help her adjust only when needed, and give her some room to figure things out.  It is not in my nature to see either of our children experiencing some distress.

Don't get me wrong.  Hannah is safe.  Her O2 saturations are good.  Her heart rate is tolerable.  But the quality of her sleep is really poor.  She was so tired today.  I could just see it around her eyes.  It was quite a struggle tonight to, with Janette's considerable help, console her about the soreness around the trach site, gas pain, and the whole way-too-tired-from-a-difficult-night predisposition.

The one plus I found today was that my Hannah-as-a-baby memory is still intact.  When she was born through three months, we didn't have the trach, but we had all the underlying issues (and more - the ones that have been since corrected surgically).  In those days, Janette and I were spending every waking moment finding good sleep and eat-without-throwing-up positions.  This morning, I saw that Hannah woke unrefreshed.  I popped her up on my shoulder, sat in a chair, and rocked and sang to her.  She quickly fell asleep, and she slept well in that position.

So tonight we're trying to emulate some of that position to see if she will rest better.  After some working into it, she has found a pretty good breathing pattern.  We've got her propped under one arm with a pillow, and we have some blow-by oxygen and humidity to keep her comfortable. 

So far, she is more sleeping better now than I've seen her the last several nights.  Keeping my fingers crossed that we're gradually turning that corner on night sleeping and night breathing.

-- Dad