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."

Sunday, February 19, 2012

Pressing through and ready for a break...

With the picture muddy, we decide to increase the dose to help clear things up.   The increased dosages start in that afternoon (Wed), and he begins to perk up even more, improved demeanor but he looks more pale and tired, and has some blue (cyanosis) around his lips.  I am very encouraged by his improved mood but still confused on the paleness and cyanosis episodes. 
We anticipated some symptoms, Little man’s body has not accepted new food in so long- and the plan was to press through….we will push through to tolerance or reaction (vomit/diarrhea/dehydration).  We need to know.   This isn’t a typical trial- it’s more of a challenge but not a challenge we can guess on, a challenge we need to be sure.  This formula could help sustain him for the next 2+yrs as his body outgrows the level of reactivity it has had, as his gut heals, as he grows.  We will press on.  We need to know.  
We also need to significantly increase his doses, a discussion with the dietitian reveals he will need ~50oz. to meet his Vit.C needs;  which he does not get in his hemp milk formula, the only thing providing Vit.C is his diet is peaches which he doesn’t eat daily.    The Alimentum will also provide some B vitamins that his vegetarian protein source (hemp) does not.  The B vitamins help his body turn the iron into oxygen rich hemoglobin and further help prevent his anemia.  We are quickly overwhelmed by this realization that the Alimentum will not be a supplement but pretty much needs to replace his hemp milk (in volume).
Wednesday night he continues to receive the feeds through the night, he has increased gassiness in his sleep and is tossing and turning a lot through the night….nothing that wakes him out of his sleep but definitely different than how soundly he has been sleeping for the past many weeks.  Thursday morning  brings a cranky and whiny boy in the morning but he eventually starts playing and plays well through the mid-morning.  During rounds with his pediatrician today, we discuss how we want to increase the Alimentum to get closer to what he is going to need and see what that does for his symptoms.   So, the first day (Tuesday to Wednesday) he got 8oz. of Alimentum (mixed with his hemp milk formula) via the NGT, the 2nd day (Wednesday into Thursday) he got 12oz. of Alimentum (mixed with his hemp milk formula) via the NGT and now, the 3rd day (Thursday afternoon to Friday afternoon) we want to increase to 24oz. Alimentum mixed with his hemp milk formula via the NGT (we divide this increase into 12hr.segments- building him up slowly). 
I also discuss that because of the symptoms he has been having, that are still not clear (don’t seem to be building but are still present as we press forward), we will need to try and rule out if what we are seeing is a chronic FPIES.  A recently published article outlines the chronic FPIES: “The CurrentUnderstanding of Immune Mechanisms of FPIES” (page 4).   Little man has more chronic FPIES reactions than acute FPIES.   Once we realized FPIES was what was ravaging his body, and removed his trigger proteins we saw dramatic improvements in his gut symptoms (chronic vomiting, diarrhea/constipation, etc)….reintroduction of these proteins results in the classic acute response (profound vomit followed by diarrhea and dehydration).  His worst trigger remains corn.  You can almost set your clock by a corn ingestion- even trace/contamination amounts.   So, to be sure he is tolerating the Alimentum, I propose we remove the potential trigger protein- going home for the weekend, get back to a baseline (be sure what we are seeing is stress or hospital related) and we reintroduce a dose on Monday – a challenge dose; followed by a 24hr.”feed” of the 50oz. he needs for his nutrition (to be sure he can digest this volume).    The pediatrician agrees to this plan and we press through Thursday, increasing the Alimentum by Thursday afternoon. 
That afternoon, he is very tired and cranky after his late nap, mostly just wants to be held, noticed cyanosis on his legs again, and also a “lacy pattern” red flare color to an area on his arm, and his skin is mottled looking.   He clearly isn’t feeling good but it is not yet clear why.  Then around 7pm, he finally has a bowel movement and there is clear streaks of blood in it.  We get it tested and it is positive for blood.    Blood in a the stool of a child with Enterocolitis is concerning but we press on; this will be evaluated later, especially if he continues to have them.  Our GI has been clear with us that she wants to assure he is fully tolerating the Alimentum before committing him to a Gtube – which is why we elected to the NGT, so we can do 2weeks full strength and then assess where he is at, with as sensitive of a system as he has- we know to proceed cautiously
Going into Friday, we’re getting ready for a break.   We are ready to go home.   We are still concerned about the blood in his diapers and other symptoms but hope that this break will help us see things through a clearer light. 
He is SO excited to be home!  He even asks for his peaches and eats about a 1/4cup of puree peaches!!  He is a little clingy in the evening and struggles to calm down to sleep but he slept well overnight, and awoke looking more rested than he had been in the hospital- maybe it’s the lighting?  Maybe it’s just the comfy bed at home vs. hospital atmosphere.  This little boy is glad to be home and plays well with his brothers.  His diapers do not show any signs of blood through the weekend.  By Sunday evening, we are seeing the effects of not drinking enough of his hemp milk formula.  He used to drink 64+oz/day before TPN, meeting his 1200-1400 caloric needs/day; but he’s not used to having to drink that much since TPN provided him 800calories/day, he dropped down to ~30oz.; so now he is only back up to ~45oz. and it is clearly not enough.  If he were to stay on hemp milk formula alone, I’d have to go back to setting my alarm and waking at night to feed him through the night to get him back up to his daily requirements (I did this for 2mo. after his initial TPN in Dec.2010, until we started probiotic and his appetite increased during the day….I would do it again if need be.    But we are heading back on Monday to rechallenge the Alimentum RTF.  

No comments:

Post a Comment