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."
Wednesday, January 12, 2011
Finding our way back to baseline....
The blow-out-diarrhea diapers stopped on Monday, now we have hard/dry/blood streaked ones in their place. I am only assuming this is another side-affect of the dehydration effects carried down. Despite how much he drank (has been drinking good amounts of his formula), he has barely stayed above the dehydrated "markers". His lips are dry, they crack and bleed daily. His labs drawn on Sunday revealed some concerns for dehydration signs (3days after the reaction), and now his stools are hard (not his normal), so hard they are causing bleeding. And then, there are the tummy aches that go with constipation.
How long will it last? How much pain is associated with the fail, what if symptoms are from other foods (previously thought to be safe)? Do even his safe foods cause problems when there is inflammation (with no problems when not)? When will he stop losing weight? How do we know he is improving or barely holding on?
And then, there are nights like last night....where I lost track of how many times we were up. Little sleep doesn't help with recovering either. I feel like his system is over-sensitive when he is recovering from a fail so we see a lot sensitized symptoms and it is hard to know how to proceed (without causing further damage or slowing down the recovery to back baseline).
Last evening, he needed a bath. At this point, we have no safe soaps, his baths are water baths, followed by a quick scrub down with soapy washcloth and thorough rinse right before getting out. Too many times he has gotten sick from drinking soapy bathwater (soaps contain citric acid=corn, or other "triggers" and substances his body can not handle)....it isn't worth the risk. Since getting the PICC line, he has had only a handful of actual, soak-in-the tub baths. The PICC runs a risk of infections so between that and his potential reactions to soap- a full bath has not been worth the risk! So, most other nights we give him a sponge bath...one soapy washcloth to wash him off, one to rinse him down. Last night, I was intending on washing his cheek...he turned his head and I washed his mouth, he immediately licked the soap off his lips!! Ugh- I tried to rinse his mouth, but apparently I didn't get enough out.
I would assume that is why we had so much difficulty sleeping last night, why he was having so much stomach pains, and gas, why he couldn't seem to get enough to eat (coat the stomach). Now we wait out these symptoms as we search for our way back to baseline.....