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."
Thursday, April 28, 2011
Fevers started on Thursday, and had progressed to 102degrees by Friday. He had his IV iron on Friday, which he seemed to tolerate. We requested he get IV fluids after because of our concern for dehydration due to his decreased intake and fevers, his doctors agreed. The fluids brought down his fever enough that day but he wouldn't drink. I call and check in with his doctors and we feel the IV fluids should have been enough to help him, as long as he drinks... Through the night he drinks ~6oz, it was enough for him to perk up a bit Saturday morning, so we hope we are on the upside. He seems to be improving through Saturday morning but by late Saturday afternoon he is declining, higher fevers are returning, he is not drinking, and becoming very clingy and whiny. He barely drank 20oz all day. That night, he had difficulty sleeping (thank goodness for strong arms of daddy!), and Sunday was clearly ill- no playing, no smiles, barely drinking, no sleeping....things are compounding and our worry for him is multiplying. We've seen him in this place before and it is hard to not know how to help him, or how much worse it is going to get before he finally gets better.
The exact mechanisms of his illness are not well known or understood, so the "typical quickly becomes the atypical" (wise words from another mom). We wondered if he had an ear infection but his daddy and I both noted that we had both cleaned his ears, pressed on them, all with no signs of discomfort from him. He did spend most of Saturday and all of Sunday night sitting up in a chair (laying on one of us) but we have spent many nights like that in the past and it was tummy pain, not ear pain.
Monday morning = appointment with a pediatrician to see if we can find a source of these fevers. Ears check- bingo. Ear infection. What antibiotic do we use? Little man had antibiotics at birth, but has not had any since. Dr.Jyonouchi has advised if he needs them to try IM Rochephin. We won't have to worry about it going through his gut, although the effects of the antibiotic will still be there (disruption of his gut flora). But disruption of his gut flora could be a good thing....if we control it as much as we can....