Mothers Intuition

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, May 21, 2012

GI Appointment

I don't even know what step to take next....We pray that we recognize the answers to our prayers on the next directions he needs for healing....

I had called earlier in the week to get a follow up appointment with the GI because of his Gtube.  The previous week, the surgeon's NP had said that their recommendation would be to put him under sedation to do a tube study.  A conversation with this NP on that Monday morning and she now felt he should have an endoscopy because it wasn't just the continuous granulation tissue that was concerning them, it was the continuous brown drainage that should not still be there with a tube that has had all these weeks to heal.   This tube is causing him daily pain and suffering and we can't decipher which symptoms are FPIES/adverse reactions to foods or tube pain and we're not even able to USE it so we agree- further evaluation needs to happen.  

By the end of that week, we not only need to talk to the GI about a tube evaluation but we need to talk about a new plan with the Alimentum and food trials...

We discuss about how he has been doing and how his Gtube is and where we are at and going.    She is sure he needs reflux medications; remindinh her there are none that he can tolerate.   She doesn't know how to treat him if she doesn't treat his apparent reflux/ulcer, attributing everything (including this tantrum) to the ulcer.  I don't mean to disagree with her but he has days where these tantrums are not anywhere near a part of the day, he has nights where he sleeps through the night, he has days where his tube doesn't ooze and isn't inflamed.  I just am not sure he has ulcer damage but agree that I would love to try and treat it- if it can be done safely.   We decide on sodium bicarbonate, in pharmacy dosing and strength, to at least neutralize the stomach acid for awhile.  She feels that the Gtube is causing the stomach to produce extra acid as this can be a normal response to a Gtube (the body naturally responds to the foreign object), she feels that the drainage from the tube (the brown gunk) is stomach acid....although does note that it is interesting/surprising that it is not breaking down his skin around the Gtube.   My suspicion is because it is stomach acid but it is not acidic. 

We discuss the Alimentum more and she hears our concerns over his tolerance of it, or our difficulty in finding or maintaining a tolerance of it and at first suggests we stay under 8oz of it per day and then later changes her mind and agrees we stop it altogether, in preparation to trial a new formula- one called ProViMin   So, the plan is to stop the Alimentum and start the Sodium bicarbonate as soon as we get the Rx for it (regular old baking soda is too hard to "dose").  

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