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."
Sunday, September 11, 2011
Admitted, what is the plan?
So, that is what this admission is for: to initiate TPN (and work through what he can tolerate of it), and then set up for home TPN. Our pediatrician reminds me it is not typically done but that it can be done (home TPN) but he is going to do the best he can to help arrange it for little man.
While in the hospital, little man's daddy and I take shifts. I take the day shift and start after I drop the boys off at school, and Jeremy takes the overnight shift. It makes being there a little less hard. I miss the older boys when I'm here at the hospital and I miss little man when I am home. It aches how much I miss them, and our routine. So, we are anxious to be able to go home. Our pediatrician has helped us with that, and agreed to help manage his care at home, while he continues on IV nutrition- in preparation for food trials. So we will be going home tomorrow morning! We will have access to 24/7 nursing care, but the goal is to teach us to do most of his needs- to our comfort level.
We will do the IV nutrition (he is still getting his hemp milk formula bottles as well- just less) for the next 2 weeks or so. The goal is to "beef up" his body, make sure that all his nutrients are at good levels, and his weight is solid, and his gut is healed. We will then be re-admitted in a few weeks, where he will have a baseline assessment done (that will likely include repeat scopes), and then we will begin food trials- monitoring his symptoms and labs. We will have a care conference and I have written up the discussion points, from the consult at CHOP.
I. Little Man's Classic FPIES:
2. Blue lips and feet (cyanosis)
4. Body temp changes
5. Blood pressure changes
II. “Other” (not clear if FPIES building, or other; but concerning)
2. Mouth itching
3. Extreme stomach cramps/pain
4. Disturbed sleep
5. Irrational behavior
6. Blood pressure changes
7. Body temperature changes
8. Significant changes in oral intakes (may be difficult to judge if on TPN)
9. Acidic stools (acid ring)
10. Inconsolable crying
11. Reflux/excessive gas
1. Platelets elevate (although may be skewed with TPN due to heparin in line?)
2. White cells decline
3. Hemoglobin declines
4. Pre-albumin declines
5. Blood in stool (visible)
6. Change in body temp (high or low)
7. Changes in blood pressure
8. Diarrhea (green and mucus)
10. Stool studies? Calprotectin, elastase?
11. Weight loss (may not be able to use if on TPN)
12. Scope (repeat scope at baseline for enzymes).
IV. Define parameters for:
1.Yielding food trial (a pause to step back and assess symptoms)
a. Worrisome and unclear symptoms, continue with ½ dose
b. Symptoms that are making Sam visibly sick (fever, cough, no sleep….), wait 3days and continue
c. Building symptoms – progressive and persistent
2.. Stopping food trial
a. Any presentation of classic FPIES symptoms (listed above)
3. Pushing through symptoms-
a. If symptoms align with enzyme deficiency, proceed with trial with Sucraid given with food.
4. Pain relief during symptoms? Stopping a reaction?
5. Home or In-hospital??
a. Home TPN-ongoing but only between trials ( ½ strength)? To maintain Sam’s weight and safety during and between trials.
b. Food trial in hospital 4+days but go home in between
c. In hospital observation status vs. full admission (to allow for going home or at least out off and on??)
Those are my thoughts, from what I've learned about FPIES, what I've learned about Little man and where we are at in this journey. We are scheduled to discuss them in a care conference, before next admission for food trials.