Today was the care conference. Long awaited, and worth the wait. It went well. We have a supportive team for Little man. The main goal of the upcoming hospital stay is for food trials and to find Little Man a diet but also to see what is going on in his body as it accepts or rejects a food; what labs, stool tests, vitals, match to his crying/disturbed sleep/stomach cramps/irrational behavior.
The plan: Scope the week of Oct.10- check for intestinal healing from past reactions; as well as a repeat/follow up on his dissacharides (enzymes used to digest sugars in the body, last July this test revealed his levels as quite low).
Admission Oct.17 for ~3days while we trial Zucchini! He will have labs run throughout this process (before feeding, during, etc), vitals every 4hrs or so (blood pressure and temp), and stools will be monitored for signs. His labs will show that his body looks like it's fighting an infection if he is reacting to a food (we've seen this in the past but have not had a time when it is recognized as directly correlated). We will also have a chart to monitor the subjective symptoms; what we're watching for with those are a building pattern (as the body gets overwhelmed). Essentially- it's like he has the flu and is being asked to run a marathon - how would you feel? How would your body respond? That is the closest I can come to describing what I see happening to him.
We will stay in for ~3days, and then go home for ~5days (if he reacts, going home will be to rest; if he doesn't react, going home will be to continue the trial at home; having a baseline done at the hospital. We have no idea what to really expect and we have to start somewhere. So, this plan is where we will start.
Only time will tell and for now, we'll continue to enjoy this "down" time with him.
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