steps forward and backward

Today overall had progress but some setbacks too. One good thing was Luke got out of bed 3 times today. That is great for his lungs and overall recovery.

 Luke was finally allowed some clear liquids (though they immediately drain out of his G tube. His dye study making sure there was no holes or leaking out of his stomach looked good. His tube down his nose into his stomach was pulled out this afternoon and a little less than 2 oz every 1 hr was allowed to be drank. This meant a lot to him.

Unfortunately right after hearing this wonderful news a setback. He had his urinary catheter pulled out this am, but no pee would come so it had to be replaced this afternoon. He really did well with it (though not at all pleased).
Nephrology came today and feel his kidneys have an acute injury but should recover back to where they were. His lab values are up, the amount of urine he is making is down, and he is way behind getting rid of the fluid that is being put into his veins. Some of this is due to the very long surgery and his veins becoming leaky and the fluid that should be in his veins have gone I.to his tissues. Some is from the kidney injury.
The pain team decreased his pain medicine and that went well but this evening he is pretty confused. So he will probably need them decreased again tomorrow. Overall his pain this admission has been much more manageable and not such a huge issue it normally is.

He loves having his siblings all here .

The gang is all here.. and growing up!

Gregory giving him a back scratch (itching has been a problem and we can't figure out why).

  School looked like this for the boys today.

Tomorrow is super sib Saturday. This is the first time we have been here for this thearapeutic program for siblings. All the big kids and Kyara will go.

Tonight Glen and I were able to participate in the Parents Coffee House. They had live music (thanks to Mark Ferrari who has a wonderful voice, great acoustic music and has been here before), manicures, chair massages, coffee/tea, all kinds of baked desserts, and getaway time for parents while being just 1-3 floors away from their child. 

Manicures in the foreground, desserts/coffee/tea to the right, live music straight back, raffle prizes to the left, and chair massages off in a side room.

Tonight Luke is getting Lasix to get the extra water off of his body and it seems to be working well. We will take very slow steps with what he can drink and eventually eat. It appears his belly is still sleeping for the surgery. He is still needing oxygen though much less than yesterday and his chest xray looks better. Goals tomorrow: to keep peeing off the extra fluid, get out his arterial IV line,  get out the catheter and pee by himself, his kidney labs are not worse and they start to recover,  his belly begins to wake up, decrease pain medicine, get out of PICU onto his home floor, get off the oxygen, and get moving more. Tall orders but hopefully all can be accomplished.