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."
Saturday, July 31, 2010
Screams in the night....
Earlier this week, we had 2 nights where the screaming reached levels it has not in a long time- his pain was inconsolable and intense!! I went as far as the ER parking lot...but didn't go in. I am having a trust issue with doctors I do not know right now and I was afraid it would once again be suggested that I am malnourishing him. Being so "fresh" from the hospital still, I couldn't bring myself to go through that again - I may have a breakdown! One of the ways I have learned to cope is that I do not "deal with" doctors that do not trust me, and I them. So, being in the hosptial among many who did not understand FPIES and how it is affecting Little Man was very, very difficult for Little Man's daddy and I to cope with. So, we waited it out- together through the night, passing Little Man back and forth while we tried to steal moments of sleep through his peaks and valleys of pain and we brought him to our pediatrician's office first thing in the morning. Our pediatrician was not in, so we saw another one in her office. Intussusception has been brought up in the past and it was again at this appointment. Unfortunatly there isn't much to "test" for unless he is having an attack (if it is slipping in and out). So, if these continue to happen - we need to make a trip to the ER for evaluation.
The other piece of the puzzle is the continued maroon throughout his stools. I don't know what else would cause maroon stools mixed in with the green from the formula when you are on a diet of white liquid. So, I brought it in for a sample and his pediatrician ordered a test....it was confirmed a few hours later that what we are seeing is in fact blood. But now to figure out why. Is it because of the continued assualt from corn proteins? Is it from the possible Intussusception? Is it from the irritation in his stomach lining? What is the pain in the middle of the night from? I think if we can solve one question we'll have our answer for the other....and we are just one step (one close step) away from his true baseline.