1 desat

So last night about 11 PM she had 1 of her no breathing/desat episodes (like she does at home).  It is amazing how much scarier it is when I am awake rather then groggy.  It lasted a minute or two.  She dropped into the 70's.

Also last night her heart-rate was dropping into the high 40's (that's low).  She occasionally does this at home. We warm her up when her heartrate is low.  So that's what I told/asked them to do.

The problem is Primary's has this new "safety" policy that they had to lower all of the thermostats on the blanket warmers.  So by the time you get them to the patients room, the blankets are no longer warm (hardly at all).

And apparently the floor does not have a bair hugger (think of an upside air hockey table in blanket form.  The blanket has holes pointing toward your body.  The device blows warm air through the blanket and the warm air blows onto your body through the holes.)  They called the ED (same as ER) and asked to borrow theirs...they were really apprehensive about loaning it out.  So they called the PICU.  PICU lent it to us, but only for a few hours, they they took it back.

Anyway, we warmed her up until her heart rate was in the high 60's then turned it off and her heart rate was fine the rest of the night.  We do this some thing at home.  If her heart rate is in the 50's when we put her to bed, we turn on her electric blanket for a half an hour.  After the half hour we check on her and if it is still in the 50's we turn it on for another half hour.  Usually by then she is warmed up for the night and she will do OK.  (She also has a space heater going).

I am definitely writing to the suggestion box about the bair hugger and the blanket warmer...I do not find the current state of affairs acceptable.

I really do not know if they will keep us or discharge us.  They don't like the desats and neither do I.  But since they happen at home...I don't know that there is anything they can do.  I really thought that the new seizure med was working (getting rid of the desats), and maybe it is...but it was a rough night.  But every night at home is rough, so it wasn't any different except that I wasn't in my own bed.  At least the new beds here are better than the old ones.  These new ones are more like a futon couch instead of a chair that unfolds.