Yesterday was a mess. The meeting ended up being 9 people and Bob and I. They all had an agenda that Bob and I did not share. Alot of conversation. Tests discussed that should have been done in the last 9 days before. Nobody could give an answer on TPN and IV fluids other than long term it can hurt the liver. We haven't been on it long term and weren't asking for it long term. We were asking for it until something else could be figured out. We asked for a transfer, they said no. We asked to go home, they said no. We were informed if we signed out AMA that it would be reported to SRS and that insurance would deny his entire stay's bill. We will be calling insurance today to discuss all this with them. We will also be calling another hospital and seeing if we can back door a transfer with another hospital and with insurance. It's not fair to trap us in a hospital that admits they don't know what's going on and they don't know how to fix it. Bob and I walked out of the meeting around 3hrs into it. They magically decided to run a 24hr stool test to find out if his body is dumping calories and fat and protein and such. They have also slightly increased his IV fluids. Currently he's sleepy. He didn't pee for 12 hrs which is a concern.
I was beyond upset. We are already losing our son to this horrible disease but to ALSO be losing him to incompetent and arrogant doctors...that's just unacceptable. For 3 days we got to see a child that we had never seen. His muscles were lose, he was happy and alert and awake for long periods of time. His skin color was good, it wasn't see thru and yellowish. He was able to do things physically that were amazing. His heartrate stayed down. His drainage was good. Then the rip that child away and I want him back. We don't have the quantity of time that we want, so why can't we have quality. Why can't we work to make him as happy and healthy as possible during the time he has.
This morning his labs are back, blood and urine. Nobody can read them and tell us. We know that there is alot of red (high) and blue (low), but we don't know what it all means. Everyone is rushing to get the doc to come over today and read it. He is hopefully coming between noon and 5pm I'm being told. I'm antsy and nervous. It's not like this is a test for his vitamin D level or something, this is life and death.
We will update more as we know. Updates have been a bit slower because I'm exhausted and worn out and tired of fighting. I just want my baby to be as healthy as possible. I want to take him home so the 7 of us as a family can spend as much QUALITY time together as possible. We NEED this, all 7 of us.