Mike Day 74: Blessings Abound

May 3, 2011

Family, Health, Mike

So the oximetry sleep study for last night did not happen.  Mike was in no way tired, and in no way sleeping.  Well 5-6 am but that is all.  He was a little twitchy/rammy too.  I think overstimulated and not terribly tired because he powernapped in the afternoon, all thought of sleep went out the window.  So we try another day. 

This morning he DID have the modified barium swallow…designed to check if he aspirates when he swallows.  On thin liquids he did once out of 4 trials…too dangerous to give him thin liquids regularly.  But he did very well on honey thickness liquids (think a milk shake though they turn to thin liquids in the mouth very quickly) and pureed foods.  Thus, he is going on a pureed diet effective today and liquids thickened to honey thickness as he desires.  Assuming he keeps up his nutrition on those foods/liquids, they won’t need to do supplemental tube feeding.  If he balks and doesn’t want them, he gets supplemental tube feedings. 

The thinking is that his swallow reflex is very delayed due to his cognitive issues…he can’t plan complex motor skills well.  They are of the opinion it MIGHT help to use Vital Stim (electrical stimulation) to the affected muscles in the throat while eating to stimulate them to work and get his brain remembering/rewiring the process of swallowing.  Since he did not know what to do with regular or ground or dry foods whatsoever, they will use those foods while applying the vital stim.  Breakfast tomorrow morning will probably be eggs of some sort (I’ve told speech therapy to expect him to be looking for bacon or corned beef hash and hash browns!)  Let’s hope all of this goes very well.  Maybe the feeding tube will beat the trach on the race out the door. 

Overall his progress has been clinically wonderful and the hospital does not anticipate any problems in justifying another week of certification and they still feel he will be hospitalized another three to four weeks.  Today I learned he did their set of 4 steps with two hand rails without a problem.  His physical progress is definitely outstripping his language/cognitive processes at this point but they tell me it’s very, very common and often getting home and experiencing familiar settings, objects, people is what it takes to begin to make big progress in those areas. 

I think his cognition is really pretty good…all things considered…it’s his ability to express it always that is lacking.    When he begged to be put to bed and I refused, citing only sick people stay in bed all day in the hospital and you’re not sick are you?  He responded yes…when asked where, he tapped his forehead.  When rammy last night, too rammy to sleep, and I asked why he couldn’t relax and rest he responded there was too much going on and motioned circles around his head.  Thus, I think he was trying to process all the stimulation from that day. 

I know that last night when I stayed with him so he would not need to wear mittens (they make him frantic) I pointed out that I was tired and sleepy and did he realize what that meant he should be?  He responded “yes, sleeping!”     We laughed and I said “So get to it!  I can’t sleep till you do!”  He motioned that I should just hop into bed with him…I pointed out it’s a twin bed and we are each king sized but he moved way over on the side by the guard rail and motioned again.  I said Okey Dokey…here I come!  He put one arm out for me to put my head on his shoulder…I put my other across his body and other arm figuring at least I could keep his hands away from tubes that way.  He stroked my arm, back and hair.  I slept.  He watched over me as I slept.  For a couple hours.  He remembers he is a husband…my husband…and I’m thrilled for that!

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