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, November 1, 2010
Let me pause here to talk about my logs. I have kept track of little man's every ounce, reaction, symptom, and diaper since April. I simply created a template in a word document, and we keep it in the kitchen. It has helped on days when I am not home, it has helped to see patterns, it helps to look over things for the 2nd time when I am entering them in the computer (now at 80pages worth!).
I used to try and do it every other day or so, but after finding his baseline- there is less to fill in except the ounces of his feedings and his diapers and then a few quick observations about the day or his sleeping patterns. A few weeks ago, he got a crumb....this may have been the beginning of that slide. Or is it from plums? Or is something else going on? Is he even absorbing his oral iron? What is going on with Little man?? What do we do?
Well, by Friday morning - my instincts were telling me that I would need to get a lab check on him along with the weight check I was planning on doing....that if we waited through the weekend we would likely end up in the same places we have before on Sunday afternoons with a very, scary sick little boy. So, a quick call to the pediatrician's office and of course she orders his labs to be done after his weight check. Weight check reveals a slight drop in his weights, which wasn't surprising as he has not been eating....like I last posted, a lot of coaxing just to get him to take a minimum of calories....
I was barely home from getting the lab draw done, little man was so very tired- asleep in the van, when the nurse called with the results....his hemoglobin had fallen to 5!! My anxiety took over, and I simply cried, I ache for my little man. My little man has been sick right under our noses....my instincts were right but not soon enough...how long had he been low like this? What would we need to do now? We have been so scared of a blood transfusion. Of course, our pediatrician called us and decided to admit him for either IV iron transfusion or blood transfusion.
Because of the complexity of his FPIES and the need for his care to involve a care team, Little man has a new pediatrician. This pediatrician is a consultant at the hospital, and was on this weekend. We met with him after getting checked in. We had a good discussion about where we were going with Little man's care, and how to best help him now. His opinion was to do a blood transfusion, that he needed the red blood cells now- not an IV iron where he could potentially react and his body would still have to build up his red blood stores from the iron being put in. We worried about reactions to both- IV iron and blood. We decided that since he was being monitored, we could wait until morning to start anything so that we could all have some time to think about it....and pray.
We knew what we had to do, it was time. We just wanted to be assured it would be done in the safest way for little man's specific needs. Not only was I worried about a transfusion reaction, or a blood product reaction, those worries were minimal compared to my worry about his low IgA and what that meant for him to receive blood, as well as just a reaction where his body would recognize foreign proteins on the blood and reject it. I expressed all these concerns to the consultant pediatrician and he patiently addressed every one. We were to think about it overnight and let him know in the morning. We would proceed, we would put this in the doctors hands, by the power of God.
The pediatrician not only listened but heard my concerns and he went one step further, to assure little man's safety. They treated little man as if he was IgA deficient (which he is only low- not completely deficient). With an IgA deficient recipient, the blood is either from an IgA deficient donor or it is washed- and washing it washes away proteins and particles that an IgA deficient person would 'attack'. They were taking every precaution. We had to trust that God was putting Little man on this path for a reason....
The transfusion started late in the day, around 3pm. It was a little uncomfortable for him at first. Thankfully, little man's aunty K was able to come to be with his brothers so both his daddy and I could be with him.
Our goal of getting his hemoglobin restored has been accomplished. Now we move on to GI. We now have a new GI. We are hopeful she will be the key to unlocking this little puzzle.....
I am off to bed now as Little man has a big day tomorrow with some tests and further consultation's with GI....so, to be continued.....