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."

Tuesday, February 14, 2012

He'll eventually get hungry enough....

Little Man is admitted for the formula trial, and the hopes to find him a supplement to his hemp milk formula.   We have decided on Alimentum RTF for that trial because although it contains casein (dairy) hydrolysate and tapioca starch as well as a tiny amount of soy oil, and also DHA/ARA that is becoming common place to have in formula’s….it doesn’t have corn.  And believe it or not, all of these risks are less than his risk to react to corn.  He has become more sensitive to corn instead of less over the past 2yrs., but the hope is that he is becoming less sensitive to some of his other original triggers.  The trial is a challenge and will be done in the hospital.   Little man is a chronic reactor (delayed reactions) so we also want to document any symptoms he has along the trial, even if they don’t lead to an acute FPIES reaction.  We get admitted on Monday and get all settled in, reviewing the plan with the doctors, and attempt to begin giving him the formula.   We decided a 1/2oz. mixed in 3oz. of formula may disguise it enough to test it out.   I was wrong, there was no disguising the taste of this formula and little man noticed it immediately and was not happy about it!   It is a long afternoon as he becomes more and more hungry and frustrated, and keeps asking for his bottle – to which we give him the 1/2oz. Ali RTF and 3oz. hemp milk mix.   His daddy arrives for the night and I am hopeful a new approach will help.  Daddy tries Ali hot, cold, over ice, in a special sippy, through a straw little man drinks about few swigs before he realizes and then refused.    We try to be optimistic that he even took the few sips but we are concerned over his refusal and hunger.  It really isn't something we are comfortable with, it isn't why we are here (in the hospital)

We request to speak to the Pediatrician.  We've seen little man starve himself before and we've watched him spiral down fast....of course this is after a reaction when he's already very sick; but we're still very worried because of his yet unexplained hypoglycemia (low blood sugar) issues he's had in the past.   If they have to give him dextrose to keep his blood sugar stable, he may not feel hungry and the dextrose (being from corn) could "muddy" the trial (he's had it in the past but with questionable symptoms).   So, we are advised that "he'll eventually get hungry enough and eat".   Well, I know that is an old saying for "typical" kids who are being picky; but it doesn't work that way for kids whose food causes pain.  We have had hospital admissions for this very reason, "he'll eventually eat when he gets hungry”, they feel he will eventually accept the Alimentum mix if it is his only source of food.   We do not agree with this recommendation because of what we know about Little man but we agree to give it overnight.  The main concern beyond him being hungry is that this isn't what we came for- to starve him, to dehydrate him, we came to challenge a formula- to find him food- not take it away.  

Thankfully, his daddy does get him to "dream feed" in the middle of the night- he takes some of the mix in his sleep.  THAT is a good sign and we are hopeful; but it wasn't enough.   He has one wet diaper in the morning and then not again all day, his lips are getting dry and his eyes are looking sunken.  And he is NOT happy.  He refused any attempts or mention of the bottle….and we fear he is gaining mistrust in something he has trusted for so long- his one stable food source, and a true comfort item.   By the time the doctors rounded (late morning) it now had been 22hrs and he's had 6oz. to drink (1.5oz. of Ali RTF).   

We discuss the nasogastric (NG) tube.  Our GI discussed this with us before we came to the hospital- how we may have to do the trial with the NG if he refuses to drink enough; we would then know if it was "safe" and see if he would drink it (while he maintained his NG); if he would not drink it; we would have to do a Gtube (surgically inserted into his stomach) to assure he gets the nutrition he needs.   This does seem drastic when he DOES eat by mouth, he takes his bottles VERY well and can drink up to 60-70oz./day without a problem, it is adequate in calories but lacking in some nutrients.  All he needs is supplemental nutrients- that he can DRINK.  But we have searched and not found these in 2yrs.....

This hospital stay was already becoming more complex than we had anticipated (and we anticipated complexities!).   So, right now, we need to focus on today.   Today, he needs nourishment.  Today, we need to find out if the Alimentum RTF is "safe" for him. Today, we need to make the decision to have the NG tube inserted to give him Ali RTF through it and let him have plain hemp milk in his bottles for his comfort.  

We make that decision and we head to the procedure room with the nurses to insert his NG tube.   After it was placed, we had to get it checked on xray to be sure of the proper placement, during that time- we offer him a bottle (of plain hemp milk) and he, thankfully, accepts it and instantly starts to (finally) feel better and drift into sleep (for a nap)….HUGE sigh of relief.   He's been through SO much already and we've barely just begun.  

X-ray showed that the tube was not placed in his stomach, so back to the procedure room we went.   This time was successful and the first feeding of 1oz. Alimentum and 3oz. Hemp milk went in around 3:30 on Tuesday.   The plan now is to continue "feeds" of 1oz. of Ali + 3oz. of Hemp milk every 3hrs for the next 24hrs. and see what/if symptoms present.  

The other thing that the X-ray showed is that his PICC line is not sitting in a good place, it is decided that it is no longer safe to use for TPN.   We will keep it placed in case he needs it for hydration while we work through this trial/challenge but plans are made to have it removed soon.  

No comments:

Post a Comment