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."

Thursday, February 23, 2012

One day at a time....and celebrating the small victories along the way

The plan for readmission was to do the challenge dose, wait 12hrs, and then begin his 24hr.dose of 50oz. of Alimentum via NGT feeds.   That dosage begins at 12am Tuesday, and he receives it through the night and every 3hrs. throughout the day.  He did drink some hemp milk formula bottles on top of that- as that remains a comfort item for him and we want to maintain that.  He played SO well today, SO much energy and smiles and giggles and barely any meltdowns and no other signs or symptoms.

With an NG tube inserted, and formula looking like a pass; the other thing that needs to be done is removal of his PICC line.  His PICC line that has been in his chest since mid-August is now not useable for IV nutrition, and the risks outweigh the benefits of keeping it in.  It feels strange to think of his "lines" not hanging from his chest, very strange.   But we are anxious, and glad for this moment.  Little man recognizes the walk to the treatment room and his bottom lip begins to quiver.   That look, that look of understanding and comprehension that he knows, that look of fear and "mommy please tell me it is going to be ok, and you'll be with me" look in his eyes.   I swoop him up and quickly tell him how proud I am of him- he is being so strong and brave.   He is such an amazing little warrior. 

It was a quick procedure, actually oddly quick- scary how fast and easy that would come out of his chest.   A small scar will be present but likely it will just disappear into his chest as he grows, as his arm PICC line scars from Dec.2010 have.   

We anticipate being discharged the next morning- he is doing SO well!!  They will start his home regimen doses through the night Tuesday night to keep us on track for Wednesday at home feeds.    Except we forget to calculate that he doesn’t need a full nights dose, after already getting a full 24hr.dose.  He got 30oz. overnight from midnight to 7:30am- a lot of volume! Too much!  Back to back full doses resulted in a vomit session on Wednesday morning.   

I get to the hospital around 8am, and he had just been cleaned up and was happily playing in the playroom when his daddy broke the news to me….”he vomited this morning”.  I stop dead- NO!  What?  He looks ok now but that isn’t new, he’s had reactions before where he played fine after.   They have not done labs yet and I’m concerned as we do know that blood counts can return to normal quickly following a reaction- within hours is what the literature says.  Although his electrolytes will still be “off” as his body fights the dehydration….but after just getting 30oz, I’m not sure we’ll see dehydration signs!

Two hours after the vomit session, we finally get a lab draw.    I’m concerned over the timing of this because it was supposed to be immediate but with further discussions with his daddy, we don’t feel this was an FPIES vomit session- it just didn’t seem like it to him.   It was a lot of vomit, and he emptied his stomach contents but it wasn’t retching vomit and it wasn’t to bile…it was stinky Alimentum (and I can still smell it on him- both of them, which isn’t normal with the bile vomit- that has a different smell, an acidic smell vs. this putrid sick vomit smell).  We are all encouraged that he is happily playing but now vomit and we’ve seen 2 blood in his stools….I want to be sure we are doing everything we can to collect what we need to analyze this as we move forward.   We wait for the labs to get back to read and request a consult with our GI for her thoughts on if we should have further inpatient evaluation or not. 

The labs come back and they ALL look good- hemoglobin is good, white cells are good, electrolytes are good.   The on staff pediatrician comes by to relay the good news.   We speak to our GI shortly after that and are reassured that she is following closely and although she remains concerned over the blood in his stool, she is encouraged by all of his other progress.  She agrees with our thoughts that we simply overfed him and tells me to slow his rate down tonight so he doesn’t get as much overnight and we don’t risk repeated vomit sessions.   We are set to go home- all of our equipment for an NG tube.   We have follow up appointments next week with the dietitian, pediatrician and GI to assess where we are at in a week and to make plans for next steps (tweak formula volumes, try another formula to get higher concentration, discuss Gtube vs. getting him to drink a new formula)…so much to think about, so much to process.    For now, we are home- re-adjusting to our schedule and adjusting to this new "feeds" system which he seems to be tolerating well, he is playing well and enjoying being home.  He even had a FULL bath!!   He hasn't had a bath since August because of the potential of introducing infection into the bloodstream with the PICC line- hard to not get his dressing all wet when you are two, splashing in a bath, so we’ve stuck to sponge baths.

One day at a time....and celebrating the small victories along the way…

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