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."
Sunday, September 19, 2010
So, we're getting our ducky's in a row....he will have his iron and hemoglobin/hematocrit checked again tomorrow. And our pediatrician asked them to add another, more specific monitoring test to the lab work (reticulocyte test?). He seems to be improving daily so we're hoping the numbers match. His daddy and I have talked about slowing down the blood draws too though, as that can't be good for him either (to lose a vial of blood every week!)...I feel as long as he remains asymptomatic - we can let him be the guide. He always has been in the past, when we see a change in his demeanor, doctors order blood tests and then begin to "believe" us that we are already saying he is sick. Dr.P, our Allergist at CHOP doesn't think lab tests are necessarily necessary - "listen to the parents"..."the symptoms tell the story". He has an appt with the GI doctor on Tuesday so we'll discuss that with her then as well.
He has been doing well, feeling better since I added the Hemp protein powder back in to his formula. I was so nervous about the possibility of a build reaction that I had taken it out last Friday, I look back now and think that may have impacted his slide downhill so fast with the reaction. He likes his formula the way it tastes now, it is just shy of 20calories/oz so he still needs to drink 50oz./day (and he does).
He had a tiny slip on Friday/Saturday. He was playing in the playroom and I looked over at him sucking on a wooden play screw from his toolbox set- except it looked like it had something on it. In his other hand was a bottle of sunscreen. Stupid free sunscreen attached to the package of little swimmers we bought earlier this summer- how did that end up in the playroom? How did it not end up in the garbage? I rarely even use sunscreen! Ugh!! I grabbed it from him but not before it was too late- he had already sucked some down. A quick look at the ingredients...of course, soy (tocophyrols) and also mango and coconut extract. Sure enough, within the hour he was itching his mouth and agitated. He had a few rough spots throughout the afternoon of tummy aches and Saturday morning had mucous in his diaper. Ugh- I hope it didn't do too much "damage" and cause him to malabsorb too much. He seems better now today, so hopefully it is already passed.
He is getting 15mg of elemental iron 2times/day for supplemental doses to build back up his iron stores. The pharmacy compounded it for him and we break up a capsule and mix it with water (as little as possible) and give it to him via syringe. It looks, smells and tastes like rust...poor little man. It is giving him stomach aches. Our pediatrician wanted us to build it up to the twice daily so until today he was getting one/day- tonight I gave him the second daily dose for the first time. He threw up. It was not projectile or violent, it didn't even smell. I tried to give it to him on a full stomach- maybe it was too full. I hope that is all it was. He seemed pretty tired after throwing up but it was bedtime. I hope that is all it was (did I say that already?) Yes, I did. When Little man is reacting- small or big, I worry- my anxiety builds. It is a bit of a post-traumatic stress kind of anxiety....most especially when I don't know what it is from, or when/if it is going to stop. With this kind of symptoms- we can only watch and wait and see. See if it builds, see if it happens again or if it was just random, see if he sleeps well tonight.
We just take it day by day. It's all we can do.