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."
Thursday, September 29, 2011
Care conference and a plan
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.