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, June 28, 2012

The G-Tube....the other 10%?

What are we doing with the G-tube?   Does he still have it? Why, if we're not using it?   Why, if he doesn't need it?  

And, then my own guilt questions:  did we make the wrong choice for him?  He's now drinking the formula, does he need the tube at all?   We put him through so much and the benefits have been so few from the tube- do we stop now and take our losses or push things and hope we can turn it around?  

When making the decision for the tube, what we were looking at is a child that struggles with weight gain, struggles with foods, gets his nutrition from a formula- that he will only drink from a bottle (at a certain temperature with minimal distractions), that he would not drink the supplemental formula (at that time) that he needed to not have TPN, that we could utilize it to do food trials in a child that struggles with textures and new foods that might make him sick, that we could increase his (and the families) quality of life by taking the stress and worry off of how much he drinks from the bottle or nibbles from his few safe foods and allowing us to bolus feed him if/when he doesn't consume enough calories or nutrients from safe foods during the day to get him through this illness thriving.  

We made the decision to go ahead with the Gtube, to get rid of the NG tube so he could still get the formula.   The formula that caused enteropathy in his intestines, the formula that he then started drinking in his bottles, the formula that we now have put on the reaction list, and switched to another formula that he does seem to be tolerating and is also drinking in his bottles.  

We were encouraged by all his team that this was the right decision but that it was ultimately our decision (that we could just continue the NG tube for ~6mo and hope that in that 6mo.,we could move his diet up enough to not need any formula or tube).  We did not want him to have the NG tube for 6mo- this was very hard on him because he couldn't play with his brothers.  A Gtube would become part of him and he could play and be a 2/3yr.old during the day;and have the "back up" for feeding that he needed.    We were encouraged that "90% of the families that make this decision, 6mo. after the tube is placed relate that it was the best decision they made for the care and quality of life for their child". 

So what about those other 10%?.  Right now, we're that other 10%....but I don't want to stay in that 10%- so how do we change that?   Well, he's drinking the formula so that reason for the tube isn't a priority anymore- although it would be an increase of his quality of life to give him bolus feeds of this formula so he is less dependent on the bottles and increased flexibility of our schedule and his playing (the job of being 3).  He needs a lot of the formula, at this point, to restore his nutrient levels and if he has any future food fails- he will need increased amounts of it then too as villi damage (small intestine) is part of his FPIES reactions. The tube would also help keep him hydrated should he have a vomit/diarrhea FPIES reaction (if we pushed a food that far). 

The Alimentum RTF caused problems before the Gtube was even inserted.   He woke up from surgery with a cough and fever, green pussy drainage from the tube from day one and granulation tissue very early on.    The green, yellow, and brown drainage never let up.....until we backed off on the Alimentum.   The tube was getting too painful for him to allow us to use it, and the burning off of the silver nitrate caused a strong aversion sense to having the tube.   So, we backed off of using it....this is what helped us see that the that symptoms were correlated with the Alimentum- but we still weren't sure what from.  The longer breaks we took, the more clear that became.  But now, he was already so averse to the tube....

If we can get home health to help us help him be comfortable with USING his tube again and then we can use it for his bolus/supplemental feeds and for food trials as we expand his menu and catch him up to where his menu should be by now- it will make it worth it...I guess I'm giving conditions of MY coping with this decision made for him....that might not be wise, as none of this may work out at all but I have to at least try. 

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