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, October 4, 2010
Pass or Fail?
Now, begins the guessing game - is this from the baking powder with corn starch? The crumb or two he may have ingested? Could be. Is it from baking soda or cream of tarter? Doubtful but could be. Or, worst yet- is this an FPIES trigger to millet or an intolerance to millet? At that point- I'm leaning towards intolerance and taking a break to see what that does to his system and see if the picture can become less muddy over the next few days. I work 4 days this week, so won't be home to monitor him anyway so a good time to just take a simple break.
Little man had a lab draw set up for this morning. We've been getting frequent checks on his labs, with his FPIES being a chronic illness- compounding situations have been sneaking up on us but we are learning more and more about FPIES and how things affect Little Man. These lab checks take a lot out of him and this morning was no exception- especially since they had to try 4 times to get the vein! Poor little man. Results came back today and a short discussion with our pediatrician helped to calm my nerves between his labs being off and his questionable build reaction, with me being at work unable to do much about any of it. His hemoglobin/hemotocrit and Iron are holding but not improved at all; although the good news is that his reticulocytes count is improved- showing his body is nicely responding to the iron supplement. It will take awhile (6weeks or so) to begin to see a tiny bump in his hemoglobin/hemotocrit and iron levels from this though....it will be a slow process but we still feel this remains a better option than a transfusion at this time. We are beginning to check other nutritional panel labs as well, to be sure his homemade formula is still helping him thrive (because as far as pain free and baseline and weight gain goes, he is thriving on it). His other labs look ok.
But that doesn't change the fact that he needs a tiny menu to round up his nutrition of micro nutrients. We are fighting hard to get him this. But in the meantime, he can't afford a set back- so we have to continue to proceed very slowly. We remain between that rock and hard place.....he needs more nutrition in his diet, but he can't afford a reaction. Does anyone have a crystal ball to see what we should even try next? Do we continue with the millet? I still feel like we should- I have been going primarily on instincts this whole time, and letting Little Man guide us along. He isn't reacting during the day and in fact, he may even be improved- behavior, sleep, comfort, mood, etc. But last night/this morning threw me enough of a warning sign to signal my instincts to take a break/slow down until the picture is less muddy (teething pain? cold? reaction? hungry?). Maybe put millet to the side and get a fruit but then again- left in the same place we were last week- he won't eat a fruit...millet he was eating (another sign that his body isn't reacting to it- he wants it).
Today, I'm left with FPIES=Feeling Powerless In Every Sense; tomorrow will be better. It is day by day and sometimes moment by moment around here. And today, I am reminded of that.