One of the hardest things has been denying him apple juice. He has been SO thirsty, but he is fluid positive (meaning he has taken in way more fluid than he has been able to put out) so they have to really limit his fluid intake. It is so sad having to try to distract him. I can give him ice chips and he likes those, but he really just wants to guzzle a drink. He also has no appetite for solids.
Today they stopped the sedation meds and the milrinone so his heart is working on its own. His blood pressure has been pretty random. It was too low last night and then high today. Same with his temperature. His body is trying to figure out his new circulation, it will come with time.
He hasn't wanted to move much, but did ventured out of the bed to sit in the chair for awhile. That completely exhausted him.
He has been such a brave kid. I have been surprised by how cooperative he has been. We hope to get some good rest tonight and if they can remove more of his lines tomorrow we will try to get him up walking around.
The doctors and nurses say he is doing well. I know every kid is different so I am trying to let Logan do things his way.
Laying sideways
His sats hit 95 yesterday. Today they have been hanging out about 90. Can't complain. We are anxious to see what how they do when he starts exerting.
How I spent the night
Trying to blow bubbles to get his lungs expanding
Hiding from the lights
Sitting in the chair, he fell asleep before he could play the ipad!
Brad keeping up on work.
Thank you everyone for EVERYTHING. We feel so much support and love from so many people.
So good to see he is doing well. I'm counting three cute blankies! Looks nice and comfy! Take care and get some rest yourself! Love you.
ReplyDeleteEveryday will continue to get better. I know some of those pictures all to well! I hope tonight is better
ReplyDeleteThanks for the update, I have been checking throughout the day. I hope you all get some rest tonight and Logan can get to drink soon!
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