Wednesday, January 12, 2011

Meeting With Doc

Tiny's doc just did rounds.  Eli's lab work shows more dehydrated than he did yesterday yet we are giving him 1300ml's of fluid every 24hrs.  She doesn't quite get it either.  We talked about if there isn't significant progress by the end of the week then we will need to transfer.  She said that is fine.  We also discussed the Mito testing that is being done today, and the possibility of the Mito being the reason he is having a problem staying hydrated.  If that is the case then we can't fix it, we can simply continue to adjust with his body.  If that is the reason they will ultimately have to work out away to go home and be able to keep him properly hydrated between his J and keeping the port accessed.  Like always this is so much information to comprehend and "accept".  We are exhausted and so is Eli.  11 days in the hospital is like 10 years in the real world. 
Eli had speech this morning and they spent some time reading books with touch and feel objects for him as well as hand signals and such.  Eli was very happy with it because books are his favorite thing.  Then he had OT this afternoon.  They did some floor play on his pat.  He struggled with the moving and muscle stretches and such.  They ended with doing some songs with alot of hand play and that helped calm him back down.
We are waiting for neuro to come back this afternoon to run a full physical.  Also having to wait to do the las of Eli's lab draw this evening because they can only pull so much blood at once.
I will update when we know more.

1 comment:

Jodi said...

We are praying for Eli and praying you get some definite answers in regards to Mito. I'm happy he is finally getting the testing he deserves. I will continue to pray the doctors figure out a way to keep him better hydrated. I am hoping you can find a hospital that will take on Eli's case so he can get the best care possible. I pray for your strength as I know this is a very difficult time right now. A lot of people are praying for your tiny man :)