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, January 6, 2011
"Bowtou" Translation: Bottle
The first couple of days home from the hospital, he took only ~30oz., but the past 3 days he has increased to ~50oz! 50-60oz./day is the volume he needs to drink....at 18cal/oz. But at 15calories/oz- he isn't meeting his needs. But he won't drink it thicker, will gag on it and distrust it and then drink less. A rock and a hard place, a balancing act....again.
So, we continue to be patient. A degree in Patience is essential with this diagnosis. We patiently await his body's adjustment while continuing to work it up slowly and coax him more, to drink more. To meet his caloric needs. To not lose the weight we just put on...3 1/2# of weight gained in 4weeks! Weight checks reveal we are slowly losing this week. We anticipated some loss with the IV nutrition stopping, from the decrease in IV fluids. We are hoping that is all it is.
It has been no small feat to get him to eat adequate amounts of his formula. He likes it, but he wasn't used to eating so much, so often- it had been a few weeks. His tummy was still so full and bloated from the TPN, he just wasn't as interested. My main goal has been to get him to eat. If it's time for him to eat (every 2hrs), I am stopping whatever it is I'm doing to sit down with him, cuddle, turn on his favorite show, coax and try, try again....whatever it takes to get him to take more and more. Each day we have made progress. It may not be enough progress but it is progress. Practicing my degree in Patience.
Increase formula volume, increase caloric value of formula, maintain weight. Do all this, while trialing a multivitamin. If he is unable to take in enough calories and maintain weight, accept the texture of his fuller caloric formula and begin gaining weight again...and soon...we may have to consider a G-tube for him.
A G-tube brings mixed feelings for me. A G-tube means increased nutrition, through reactions (full blown or "build" ones where his appetite decreases), although while they are having a reaction- their guts are not accepting food- no matter what form given, the inflammation is acute and severe. A G-tube means adequate hydration through a reaction (a minor one, a full-blown one would still need IV fluids as any fluids taken in would be expelled out). A G-tube would assure adequate caloric intakes on days when he is disinterested in his bottles, or slowing down enough to eat enough. A G-tube would take some of those kind of stresses away. But a G-tube would also bring on it's own stress. Surgery is a main concern (with yet another hospitalization and we haven't even fully caught our breath from the last one!), but get through that and then there is site care and preventing infections (externally and internal GI infections-with an added portal for germs to enter the risk is high). Another concern is that feeding him his calories via the tube and he will lose even more interest in eating and we would just have to give him more and more via the tube and he would have less and less chances for practice and increased risk for oral aversions. A G-tube is an answer, is it the right answer for Little Man? Would it be better for him long term? Would it give us more set backs? Would it be worth the extra stresses? Or can Little Man overcome the obstacles again? We let him guide us through this....