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, July 10, 2011
Little man had 2 IV iron infusions, but his hemoglobin barely moved and was still very low when we rechecked it. Iron stores remained low as well. Why is this happening? It is becoming more evident that he needs a full anemia work-up (re work-up) but not this week as we were planning on leaving town for a few days. A discussion with the GI and we know he needs more treatment, he is going to need another transfusion. His iron stores got too low again and his body simply can not make enough hemoglobin or make it fast enough with the stores he has. We decide it is best for him to get another blood transfusion. My heart sinks and I melt. I can't help it, I am crying....I ache for my little man. He has to endure so much. Is it something I missed? Something I did, something I allowed him to have that is making him decline again? I don't even know and can not think about it. No time for a full melt down, he needs my strength. And we need to get to the infusion center so they can begin the preparations for his transfusion....
I pack some bottles and some toys, blanket and off we go. We get to the Pediatric Infusion Therapy Center (PITC) at the hospital and Little man already is unhappy with where we are going. This has been too much- needle sticks, lab draws, IV infusions...too many this week already. They call for the IV team, and lab draw - "difficult stick" she tells the technician on the call. They arrive and get to work- assessing veins. Veins that are hiding and mad. Surprisingly to all, he is not as bruised as one would expect him to be, given his severe anemia (one of anemia tell-tale symptoms is bruising). The think they have one in his left arm...poke- nope, it jumped. Get out, try the right arm (little man is getting difficult to hold down), poke- nope, it deflated. The blood is thick and not coming. They need a lab draw before his transfusion to type and cross his blood, the line is not accessible. The lab RN is ready to "call it" (sometimes they will call the Peds trauma team to get a difficult stick). A short discussion on what I would like them to do. Is going home and pretending all of this isn't really happening an option? No, no it's not. I'm holding a tired, anemic, growing little boy who needs adequate hemoglobin to have ample oxygen being supplied to his brain. "What about his heels?" I ask, cringing at the thought. "Will you let us try a heel?" the RN asks kindly. "f you can use a heal for the transfusion, and can get a vein...then yes- please try", as I remove his socks and shoes. Immediately they found a viable vein. Poke, bingo. Now, a new problem is securing a line in a heel of a 2yr.old who wants this stuff "off?!". We manage to secure it and distract him, and then wait for a few hours while they type and cross and then prepare his blood. The transfusion takes 3hrs, it's ordered for 2hrs but even the technician that comes to run it acknowledges that might be fast for a little guy with his sensitivities. We did 4hrs. last fall and he tolerated it well and responded well to it so we decide on 3hrs....it's late in the afternoon already and it's been a long day. We're tired....and we're leaving the next day for vacation!