I wrote quickly about the IV problem. It was fine and then it was horrible in no time. They call the arm "infiltrated". The fluids/meds they were giving him went into his arm instead of his veins. That's a problem. Honestly, I wondered if his fingers were safe or in trouble. They were the color of a purple plum. And his hand was pure white.
His arm from finger tips to shoulder feel like a potato. Absolutely no give. Everyone on the floor has heard about it apparently and an incident report had to be made. Of course, it was no one's fault. It truly just happened. Had I not been IN the room the whole time, I would have wondered but as it was, I know what happened.
So he needed a new IV. On Friday when we got here, they had a hard time finding a vein. They finally found one they could do and after working at it for quite a while, the vein eventually 'blew'. Rather than trying again, they called the IV Team in. She got it on the first try, but that was after searching high and low for a vein that would work.
Today, they didn't even try to do it and immediately called the IV team. The one vein is still blown from Friday. The whole other arm is completely unusable. So they started on his feet. They did a stick on each foot and blew one vein and had to give up on the other one. Then they tried the arm (non hurt one) and blew that vein too.
Now as horrible as that sounds, it's really sad because he can't fight them.... and he has the world's most pitiful cry. But I am here watching them. I see how hard they are working! They are truly trying to help him.
So why are his veins so bad right now? He was already a bit of a tricky one. But he's retaining fluids. In fact, he was 15 pounds, 10 ounces when he arrived. On Sunday, I noticed he was a bit "puffy". He weighed 17 pounds 15 ounces! He's gained 2 pounds 5 ounces in 48 hours!
As I sit and type this (5:15 pm Monday), they still haven't come back to do the IV. They have to have 2 people and a special ultrasound machine to find a vein. So in the meantime, he's not getting the fluids and it's giving him a chance to de-puff. But he's also not getting his meds. They'll be back soon I'm sure.
His tummy is completely torn up from all the antibiotics too. Poor guy! His GTube site has an infection. (They're putting antibiotics on it and he's getting IV antibiotics.)
Finally, they've started him on some new meds and new treatments to help loosen up his lungs/congestion. A typical kid could cough it up and get it moving but his muscles are so weak, it just sits there. We don't go home until they're cleared! Yikes.
He has also been started on some treatments. One is this vest that goes all around his tummy and shakes him vigorously. He LOVES it. He thinks it's a game. But he also has this treatment called "cough assist" which inhales and exhales for him via mask. He HATES it. He acts like he can't breathe. He got so upset that he was a sweaty mess. He gets those every 4 hours around the clock. Won't THAT be fun?
I'll post some more "lighter" things later. I just want to keep everyone informed on what is going on.
Thanks for the love!