Peter had ANOTHER mystery illness with low-grade fever, nausea, abdominal tenderness, fluid gain, increased respiratations and heartrate, and grunting respirations. And again it was the weekend... at night. And then the idea struck that perhaps these mystery illnesses have something in common. Peter has not been ill in so long, and then three times in less than two months?! Looking back through notes there are two things that seem in common as possible causes - enteral flagyl or the more lengthy time spent with the G-tube clamped off. So, we stopped both, and Peter pulled right on out of the illness within 24 hours after stopping both things. On Monday's routine lab draw, his numbers all look good, except for the C-reactive protein (CRP) which went really high and is a marker of inflammation or infection, but is non-specific. We got cultures drawn from the PICC and urine (done at home, to our great relief), but he is still acting well since our Friday illness, so the CRP may mean he picked up a virus, or that the possible allergy also caused inflammation, or somthing else... but if he is acting well nothing to worry about, unless it keeps rising in subsequent labs.
The enteral flagyl was to treat bacterial overgrowth in his gut which is a common issue in kids that aren't eating. We will switch back to cipro again, every 3 weeks for a week via G-tube. He has tolerated that well in the past.
We will also hold off on clamping the G-tube again for another week or two until we feel certain Peter is not ill by labs and behavior and time. So, still no enteral feeds and now no clamping. Not making much progress in the enteral department this way, but it would be hard to decide if he is having intolerance to feeds or to clamping if we threw that into the picture and he started acting ill again.
He seems to be liking the extra protein and calories in the TPN. Weight is still down, but his energy is definitely up. He keeps wanting to walk with his "car" walker from room to room, pausing to look in the refrigerator, kitchen cabinets, and to smell almost every spice that we have... several times a day. And, he pauses to look at his reflection as he walks past the stove and the dishwasher, with a gigantic grin of well-deserved satisfaction.
Peter's walker, "car"
In the kitchen
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