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."
Monday, August 15, 2011
My heart aches...
Monday was a long day- many calls in...some good news, some not so much. Help from other FPIES mom friends, with one going the extra mile for support today, and we have 3 oral Vit.C supplements on the way to our house- I'm still not sure which one we'll go with long term but each one is a better gamble than a corn or tapioca derived one. Two of them are from acercola berry and one is from sago palm. And hopefully we won't need either right away as I pray the IV route will work out...and start tomorrow.
The plan is for a hospital admission at 11am, with a PICC lines placed sometime after and parenteral nutrition started. The IV Vit.C is being ordered. The morning arrives and we report in, he was taken down to have the PICC placed...
The next day was another long day in the hospital. It is so hard to be in the hospital, away from home and the other boys and our routine; add to that an irrational, inconsolable 2yr.old and an unsupportive team that tells you his allergies are "just intolerance's" and that not advancing his diet has resulted in life threatening conditions means you have to pull from all the coping mechanisms you have learned over the many months of this very frustrating disorder. Because to me, they are suggesting we are choosing to restrict his diet, when not a single day goes by that I don't dream of feeding him anything, something!
We are preparing for our trip to CHOP- being here is to give him life-saving Vit.C supplements via IV that his body was telling us was very essentially necessary. The decision was to place the PICC, since he needed the IV Vit.C, we may be able to do supplemental nutrition and other vitamins/minerals he may be low on (doesn't get in his restricted diet). We placed the PICC for a few reasons, but complimentary nutrition for catch up growth, possible steroid trial when we return from CHOP, nutrients like Vit.C and iron. He needs high dosages of Vit.C for at least 2weeks to fully turn around his deficiency (and subsequent scurvy) symptoms. We are leaving for CHOP on the weekend and we are unsure of an oral Vit.C. We have a few choices that I bought online that I am willing to give him for the week we are gone; and when we get back we hope to hear that Walgreens was successful in compounding a safe beet-derived Vit.C that will be ideal for the longer term for him (as long as he doesn't react to beet!). Pharmaceutical grade ascorbic acid is the better option for him, for dosing reasons, for purity and for long term.
I am anxious to get through the next few days and get to CHOP, where answers and support are (hopefully) waiting and we can return and get him on a better track.