The night started off reasonably well. Owen Stayed up later then usual because he had a late nap. He feel asleep around 11pm. At 11:15 they came in to check his vitals. At midnight they came in to start his medicine. At 1am they came in to stop this medicine. 1:30am Owen started chocking, then began to throw up his feeding. They came in got him and his bed cleaned up, then restarted his feeding and left the room. I no sooner got back in bed and he started throwing up again. Again they came in to change his bed and stop his tube feeding. By now it is about 3am. 10 minutes later they came back in to start him on IV fluids. 10 minutes later his IV had blown and they needed to start a new one. That is always a good time. Owen doesn't have any luck in the needle stick department. He always get stuck multiple times before they get it. Great IV in fluids going. Back to sleep it is now 4 am. At 4:30 they came to check his vitals, they can't get his temperature. 20 minutes later they are back to try again. Owen is having trouble keeping his temperature up. They want to do a rectal temp. I flat out said no. We turned up the temp in the room and added more blankets. Temp still a little low, they let it go because it is all most time for the doctors to round.
7am., student doctor comes in and talks with me about our night and states that they will most likely stop his tube feedings and just give IV fluids until after his surgery. Then I lose it. I tell her under no circumstances will his tube feedings be stopped during the day. I am fine with them stopping it a night but not during the day. I remind her again that his lab work showed singes of a child going through starvation. I inform her that that is an unacceptable situation for Owen. She tells me she will talk to the "team" and "they" will make a decision. I told her the decision has all ready been made. So I will be curious to see what the team says.
Please continue to pray for us. I feel like I am failing him. Need to go get dressed I don't want to be in my pj's when the team comes.
Omgoodness - you are not failing him - you are doing so right by him!! And, good for you - fighting for the feeding - he needs his nutrition to be strong for his procedure! Maybe some PPN?? I'm not an expert in pediatric nutrition but maybe that would be an option.
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