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, June 19, 2011
Tired of Anemia
We had discussed a lab check with the pediatrician at our 2yr.well child just a few weeks ago; but we decided to hold off- unless/until we saw symptoms. Well, with all of these symptoms, it would have to be done sooner than our planned 6week follow up. A lab draw right away on Friday morning revealed a Hemoglobin of 6.1 (when normal is 11-14 for this age). Sigh, tears, sigh....phone calls and messages to his doctors (our clinic has an online patient portal for checking labs and sending messages, it works well for the needs of chronic illness) and it is decided he needs to be evaluated right away, to check in at the Pediatric infusion center where he will receive appropriate treatment. A blood transfusion may be necessary if he has a too low, or too high heart rate.
Little man has already had a long morning, an IV stick for a lab draw....correction, 2 IV sticks for a lab draw- he has tricky veins. We've learned enough about his veins and draws that if they stick him and can't get blood immediately, to just pull out and try another site. Some lab techs do not appreciate being told how to do their job, because that is what they are doing- their job. But it is my job to remind them that this is a little boy, and he also happens to be a little boy who has to endure many IV sticks - we do not need to make them more traumatizing then it needs to be. We have stood by and watched them dig and poke and prod around under his skin looking for that vein that "was just right there" enough to know that once it jumps- there is no finding it. Get out, find a different vein. So, we switch arms, and positions and this vein comes right away. They get the blood they need while Little Man screams in objection. He doesn't like to be distracted, he doesn't like to be told "it's ok"- he just wants it done and he does not take his eyes off the needle until it is done. They bandage him up and he sits up. Tears done. He is such a trooper. He looks over my shoulder at the tackle box that carries the prizes, "quack, quack?" he questions, he knows he is due for another rubber duckie. He picks out what must be his 30th duckie by now, and we head out. He stops me half way out the door because we passed by the stickers. I try to tell him he already got a duckie, he doesn't need a sticker. He quickly informs me that he does need a sticker, he picks out a puppy one and has to have it stuck on his shirt right away - it is his badge of courage, and he wears it proud. "Bye?" he says now. And we go home to wait for the test results and decisions on treatment....