Thursday, May 3, 2012

The roller coaster that only goes down??

I am frequently reminded that patients with mitochondrial disease are on a roller coaster with several ups and downs. Audrey's roller coaster has only been going down. For a solid year now we have been getting bad news after bad news and she's had more and more interventions with little success. If this is indeed her roller coaster, we should be going up at any moment now, right??

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!
Not feeling good. Sleeping after screaming for an hour.

Poor baby girl!

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