I am going over my logs and trying to find the pattern of where this all could be connected to- a start point? I can't really find one, except that once he started to have issues- it just looks like a ball rolling downhill collecting things along the way. Each step we took with anything compounded on issues/inflammation/enhanced inflammatory and immune responses he was already having. Is he chronically reacting to something? Is he just declining? Is his nutrition not keeping up? Is his immune system overreacting? What is going on?
I look back to notes from our last hospital stay. He was having issues with sleep at that time but otherwise doing ok. Once the PICC line was removed, he gradually started to sleep better. It took A LOT of work to retrain him for sleep. But also, the multivitamin (which had corn starch derived ingredients) fail set off his inflammatory reaction and I think we just kept seeing things cascade from that? His body doesn't seem to know how to shut off once it starts the inflammation. Is this an auto-immune component or an immature system?
Some kids take 5-7days to heal and ready for next food trials; while others- similar to little man- are taking 4-6 weeks before they are properly digesting their safe foods, gaining weight and reflux and such are not bothering them at night. So, for our little man, with the slowly healing inflammation, we just see compounding problems and then if he takes continued hits (accidental ingestion, accidental exposures, trials of banana, blueberry, elk, B vitamin, different probiotic strains....) it just continues to compound....
Will TPN reset us again? Is it necessary? What assurances would we have that we don't land here again? What would we do different after this TPN?
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