Up All Night

Most of the nurses that come in and take care of Kai are wonderful.  However, there are a certain few that for one reason or another, we don't like.  There is one is particular that we really dislike.  That nurse was supposed to come Saturday night.  For the third time in the last month, she called in sick.  We received a phone call from the nursing agency about eight that night.  The nurse called in sick and no one else was available....so....we went without a nurse Saturday night.

It wouldn't have been too bad, except we went to bed really late Friday night (as in after 2 in the morning) and we were up by 7.  It was my dad's last night and we stayed up late watching A Christmas Carol (a family tradition for Christmas). 

I stayed up until 2:30 with Kai, who was restless and fussy all night.  He would drift off to sleep only to jerk himself awake and fuss all over again.  Finally, at 2 he settled into a decent sleep.  Going from constant up and down to nothing caused me to to get drowsy, so although I had tried to make it until 3 so J could sleep longer, I gave in and woke him early.

J took over from 2:30 and said that Kai kept having apnea episodes so he was busy as well.  Although it was rough, we made due the best we could.  We feel it was a blessing that it happened on a weekend night instead of a weekday when J isn't home to help.

We are currently going through the reapplication process for the nursing.  60 days sure go by quickly.  We are still so borderline with "needing" a nurse.  I think the whole process is really stupid because it is all done on a grid system instead of looking at the child and the child's circumstances.  Simply because Kai doesn't need his thumb splints anymore we are now lower on the grid score which puts our "need" lower, even though his apnea and aspiration issues are more severe and  cause that we maintain 24 hour line of sight with him.  There is no sleeping when taking care of Kai--it is literally impossible with all the care that he requires, and yet, because he doesn't need the thumb splints (all they are are little pieces of fabric that wrap around his thumb and wrist to extend them--takes two seconds to put on and off, and they are not critical like many of the other things we have to do with him now) we may not get nursing.  Ridiculous.  We are at the point where we now need to get a letter from Kai's pediatrician on why we need a night nurse.  The sad thing is, Kai's condition is much worse than it was 60 days ago when we were approved with no problem.  He didn't have the apnea then.  He didn't have the cold and the increased secretions and the wheezing and the problems breathing.  It really is a sad commentary on our society--everything is about numbers.  A child may have a lot on the grid but they are little things like splints or medications will get nursing, while a child who doesn't have very much on the grid but is more severe such as apnea doesn't qualify.  Not right.

Onto better things.  It was great having my dad come out for the couple days he was here.  The weekend with my dad was really nice but way too short.  He was able to get some quality time in with both Zuri and Kai.  Zuri really enjoyed having Grandpa around.  She keeps asking for Grandpa and is missing him already!