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."
Tuesday, August 30, 2011
Back home with a plan and follow up.
The plan for the next day is to see our Pediatrician and get a weight check, maybe labs, get refill Rx for his heparin for his line, discuss our CHOP visits, get FMLA paperwork filled out, discuss Vit.C supplement (that is making Sam an insomniac and some occasional irrational behavior but otherwise seems to be responding well to it). Ah! Good to be home. Hoping to get things moving again!
The pediatrician appointment went well, Little man weighs in at just 11kg (24.8#)- NOT moving which means no gains but also means no loss.
We discussed some of the plans for the next months, and agreed that plans need to be well defined before we start food trials. I need to work on writing up something that we can make sure everything is covered at the care conference with our GI and our Pediatrician to do this (define his care for food trials).
The basic outline of the plan is that he will be admitted next week sometime (likely Wednesday), he will begin TPN again to build him up a bit before the first trial; he will likely have a scope/colonscopy before the trial as well. We don't know yet what food(s) we will be trialing but I have some idea's in mind We discussed that he will be primarily in the hospital for quite a few weeks, maybe even 1-2months....it is hard to know- it will depend on his reactions and healing time between reactions, etc. We hope to be able to come home a bit between trials (if there is a "fail").
I'm so nervous and yet excited at the same time....could we actually get him a tiny menu??!