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."
Friday, April 27, 2012
Sunday, April 22, 2012
Saturday, April 21, 2012
Friday, April 20, 2012
We went in on Monday morning to get the granulation tissue looked at again; sure enough, she had to burn a significant piece off- he was more upset about being held down than about it being painful....I can tell his pain isn't all about granulation tissue, there must be something else. We had the Nurse Practitioner hook up his extension while we were there and do a "feed"; but we didn't leave it hooked up; and although we were able to get one more "feed' in that afternoon, and one on Tuesday but then Tuesday afternoon, we brought him back in to get the "lip" burned off again because I guess if you stay right on top of it at first signs, it will help it stay back a little longer. When I say, "burn"- it means to use Silver Nitrate sticks and cauterize it off. It turns the area black and gives his skin a "blueberry" stain (looks like ink), and then it eventually dries up and falls off. At this appointment, the nurse had to clean off this dried up residue quite a bit because he had been SO sensitive, he was not even letting us CLEAN it! She comments about how the leakage and dried stuff can make his skin more sensitive, causing some erythema (redness/rashy). I'm not sure if the erythema is caused by the tube/site leakage or an issue with the steroid cream we need to use to help treat the granulation tissue between silver nitrate treatments....could be both but he doesn't always have this redness. Anyway, she asked about getting him in the bathtub. They told us not to bath him until he was healed, 4-6weeks! We are just now on the 4week mark and we just honestly were not taking any chances of him getting an infection- especially since at the last time he had the granulation tissue removed, he had a spot that opened up and bleed. Why take chances? He's had bed/sponge baths for the whole 6mo. he had his PICC, what's another few weeks? Well, we got the clearance to do some baths, that has helped a lot with keeping it clean!
Wednesday, April 18, 2012
Sunday, April 8, 2012
FPIES can feel powerless, waiting for reactions, and over reactions of the immune system that is attacking something that is meant to nourish the body. Being the parent that has to chose which foods, in a gamble fashion, that may or may not cause the reaction. To cause your child to be sick - violently and/or for days on end. So, how do you find peace in that? Everyone finds it in their own way...
My faith helps me with mine, but even with a strong faith- I had to allow myself the stages of grief for this loss to nurture my child through food and instead to nurture him through a chronic illness that is little understood.
I still have times of feeling powerless with this allergy; but for me the key has been in being in tune with my inner peace and strength from Above, and not search for my own power,to help me on this journey. Peace provided by Divine Love, and surrounded by family and friends that care so much for our family and our little man. Friends that are like family, family that are friends....helping us in our time of need- through strength and prayers, and hope. And of course, the newly found friends that make up our FPIES Family, friends that hold us up in prayer and who inspire our hope by learning together on this journey.
We trust in our Faith and that provides us Peace.