Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Sunday, July 31, 2011
Facing another hospital stay?
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?