Eli updates

The last three days have been un believable. Saturday was probably the most mellow of the three days. We talked to the doc. It was a better conversation however still not really listening to what we were saying. So we figured we would wait until sunday and talk to the next hospitalist. Well he came to the room while we were getting ready for our wedding. They seem to run very late on the weekend. Saturday she wasn't here until like 6pm pretty nerve racking when u want answers that no one seems to have. We talked to him real briefly due to we were super busy. He stated eli couldn't go down without his TB mask which we were told the day before that we could go with a basic mask. Then monday came. Hmm lets just say monday was bad. Very bad. We asked the nurse for like the 10 th time in 3 days about the meeting and she said it was 2pm and that's what she was sure of since friday. Would of been nice to know cause i could of worked a few hours. I just didn't want heather to go into this meeting without me. So we tried to just relax before it wasn't easy to do. Then it came. We walked in and saw 9 people other than us. Mind u we were told it would be us the dietician and the doctor. Hmm so wasn't that. Then the meeting started it went ok for a bit seemed like we were getting somewhere. Then out of no where a social worker jump in and well lets just say it went all down hill from there. It was no longer a semi peaceful meeting. We were there for like 3hrs. We left just frustrated and angrier than we were before the meeting. People stopped listening. So we left. We were not going to be told that time was what the issue was and we weren't listening. Our issue was communication. We weren't getting our questions answered we were told no no and this is how it is. Very frustrating. We were told if we signed out AMA that our insurance wouldn't cover our stay and that SRS would be called. What a bunch of crock. We just want whats best for eli and it feels like we are all not on the same page. My son will die one day all we want is quality of life to be the best we can get. There were like two days that he looked and acted the best we have ever seen. We want that. That's it. The docs are now doing a 24 fecal testing to check on absorption and checking ph balance on his g output. They also increased his fluids. Unknown if this will do anything. I wish this would of been done a week ago maybe we could of been home by now. Especially when we mentioned that absorption could of been an issue. We have taking about this since last monday. Humph.

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