Thursday - Still no progression on the Chest Tube

Gage had a great night.  At PT he was able to play the WII.  His selection of games are not similar to the Lindsey selection.  The nurse (Jenna - one of his favorites) and I strongly encouraged him to do "Just Dance 2014" with us.  It was quite the pull, but we finally talked him into doing "Ghost Busters" (he was the slime goblin and conveniently had no legs just hand gestures) and "YMCA." He then played golf and went for his 2nd bike ride.  He was thinking it was pretty funny to watch Joann, the therapist, Jenna and I run to keep up with him.  Jenna was dragging the IV pole, Joann was helping him steer the bike and I was making sure his tubes were clear of the tires.  IF only I was Elastagirl and could have videoed the whole thing.  I am sure it was quite entertaining. Yesterday we put up some Christmas decorations in his room.  We didn't go all out like the Lindsey days, only because we are hoping to get out in the next couple weeks.

In rounds today, they talked about his chest tube drainage.  Something was brought up that finally made sense.  They were saying that he is draining like someone with a congenital heart defect. Usually these kids have high right heart pressures.  They alluded that his right side function was pretty low, even though the left side of his heart is a little better, the right side of his heart might not be relaxing all the way.  This would cause the right side pressures to be higher.  They are not going to do anything about it yet, they just want to give his tube some more time.  If in the next week or so the drainage does not slow down, they will look at starting him on medicine to help the pressures and see if that helps. They are still adjusting his blood thinning medicine (coumadin). Once the levels are where they want them he can come off the heparin.  This would make it so he wouldn't have to drag his IV pole around.

He had a 4 minute suction event yesterday (this is a long one), but I had to explain that he was being held down while 2 dressings were being changed.  One for his picc line (they might as well been sawing his arm off the way he was screaming) and the 2nd was his drive line.  I change his drive line dressing, since I will be doing it at home.  He hates me doing it and always asks me to let the doctors do it.  Unfortunately he doesn't have a choice on that one. Needless to say, the 4 minutes was from him screaming and being held down.  I would say he is feeling a little better. He has had 2-3 suction events a day other than the 4 minute one.  They don't seem alarmed and he isn't acting any different during the episodes.

It is raining here today, which isn't snow, but it is fun to see a little weather change.

Gage in physical therapy.  Jenna is next to him.

Our Christmas decorations.