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, June 20, 2011
"I am SO Two!"
Little man had his 2nd birthday recently, but that is not what this post is about- that will come soon though (as I'm still working on organizing/downloading the pictures...hey, we've been a bit busy!).
Just a week after his birthday, and we are finding ourselves sinking into anemia traps again. His hemoglobin seems to have spiraled down quickly. The lab draw reveals a Hemoglobin of 6.1 and Ferritin stores are quite low again as well. There isn't enough iron being absorbed to make iron rich hemoglobin with. All that we know right now is that it is a combination effect of:
1). colitis flares with food trials as evidenced by blood in diapers for 1-2days following small ingestion's of foods, or triggers (sucrose in IV iron 6 weeks ago) and unknown days of microscopic blood not visible.
2). Not enough Vit.C to absorb the plant based source of iron (despite his hemp supplying almost 3x what his body needs)
3). Missing micronutrients (B vitamins) to synthesize iron.
4). Acute inflammation following reactions
4). Gut flora involvement??
Peaches supply Vit.C but he doesn't eat them consistently enough to get enough of it from them. We just started B vitamins and it looks as if he is tolerating them well (we are 1 week in!); so once we restore his iron levels - will the B vitamin supplementation to his vegetarian diet be enough? We can only hope.
But right now, the question remained if he needed a blood transfusion or could proceed to straight IV iron infusion. And for that, he needs to be evaluated. We say good-bye to Daddy....which he is not happy about and head to the Pediatric Infusion Therapy Center and await the Physician's Assistant to come and evaluate. If his heart rate is too slow, or too rapid- they will need to do a blood transfusion before they do iron infusion.
It takes 10-15minutes to get from our house to the hospital parking....he's been screaming the whole way- more like yelling. As if he is saying "I know this drill and I do NOT like it....you don't take me with when daddy is home unless it's to the doctor, take me back home, take me back to my daddy". He kept trying to wipe his tears, they were just an annoyance getting in the way and he was trying to tell me something. There was a point, as we pulled into the parking garage that I just wanted to turn around and go home. What would be the point in his if he is going to be screaming like this? But, no- he needs this, he needs to be evaluated and he needs treatment. Wasn't he just so tired a few hours ago that I was carrying him around the house? Where is the energy to have this tantrum coming from?
He continues to carry on, stopping for a split second to pout his lip as we enter the parking garage. I breath a sigh of relief- maybe he's resigned and we can walk into the hospital without them thinking I am hurting my child!? Nope, he takes a breath and begins again. We go up to the infusion center with little breaks from the objections. The nurse tries to take vitals, which only makes him more upset and clearly accurate assessment of his vitals is not going to be possible in this state. The physician assistant comes in to exam him and the tantrum escalates....does he even remember what his tantrum is about? No, but he knows exactly where we are at.
I have witnessed tantrums to this caliber before but not from him. He is adamant that no one is coming near him, and he barely will let me hang on to him- he is not happy with me either. I called his daddy and said "you've got to come, he won't calm down, he needs you". I knew he would be happy enough to see his daddy that he would at least calm down and catch a breath so we could better assess things. In the meantime, the PA and I discuss his symptoms and observe the energy it is taking for him to have this tantrum. It is decided that we can hold off on a blood transfusion and proceed with the IV iron. But it is already 3pm in the afternoon, the IV dextran takes 6hrs. to infuse and the Infusion Center closes at 4pm.
They ordered IV Iron Sucrose. The one he got SO-SO sick off of, the one no one understands why he reacts to....a corn sugar injected into his veins where T cells have to encounter it at some point? I don't know why it is hard to understand but I do know what we see happen to our little man. I wait until his daddy arrives a few minutes later and ask if he would want Little Man to receive the IV iron sucrose. I barely finished my sentence, and he says "NO!....absolutely no way is he getting IV iron sucrose, we will not put him through that again- he was so sick". The decision is noted and understood, we will return in the morning for the 6hr. IV iron dextran infusion.
We all go home exhausted.