So following her procedures Monday, they started pedialytle through her new j tube. It was started at 15mls per hour, which I thought was ambitious since her normal rate is 35, but what do I know. By Tuesday morning she had 400 mls of bile out her g-tube. Maybe mom does know something. The pedialyte was stopped and she was a happy camper. Tuesday went by well and Tuesday evening we restarted her pedialyte at 10ml/hr. In the morning she had 70mls out. Not too terrible! The resident came and said lets go up to 20ml per hour. Then GI came around and said lets elevate her g-tube. Within 2 hours my girl was screaming in pain and retching. The g-tube was put back to gravity, the pedialyte was turned off, x-ray came around. There was nothing remarkable on her x-ray, her g-tube put out 100mls in the first 3 hours it was down and she was restarted at 10 of pedialyte. It went well overnight.
So now everyone is stumped. Why is she putting out so much from her g-tube? Why isn't she tolerating anything through her j-tube? We were hoping this would be a temporary fix all but once again Audrey has to be unique. Nothing seems to be moving through her and we are at a loss about how to give her meds. If we put them in her g-tube she screams for the hour it's clamped and then the meds come pouring out when we open it. If we put them in her j-tube there is less absorption and she cries from the pain of it about 10 minutes after her meds are given. So this is where we are. 8 days now in the hospital and still losing weight, not tolerating feeds. Her roller coaster needs to go up any second now!
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Not feeling good. Sleeping after screaming for an hour. |
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Poor baby girl! |
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