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."

Wednesday, April 18, 2012

Good Days to come?

With the granulation tissue removed, he was having some better days. His daddy and I still had to work together to get him hooked up for his feeds, and he wasn't getting all of what he was supposed to but we were working our way back up.  His daddy was able to take some time off work to begin to work him back up a feed schedule so last week when he had to return back to the routine, I called our home health nurse to come out and help me get more familiar and comfortable with hooking him up by myself - because, 3 weeks in and I had not ever hooked up his feeding tube extension to his button on my own (we had kept the extension hooked up all this time, taped to his side; but with the granulation tissue complexities- we needed to be unhooking him so it wasn't pulling on the tube/button.  

The home health nurse got here and he resisted right away- he had skipped his nap, so that wasn't helping.   We chatted about his general tube cares for awhile and that seemed to help him familiarize enough and we made one last effort to ask him about his tube  (feeding extension) and where it was at - he casually said "oh, in the other room"; I asked him if we should get it and he said "yes"; and then asked if I could hook it up and if he would help, he said "yes, here" and opened up his button and grabbed the tube extension in an effort to hook it up himself!  I was near tears at how good he was being and how brave he is.   I couldn't quite get it so the nurse quickly jumped in- so as to not lose his enthusiasm for it!  This was a contrast because just a few minutes before, he was actually pulling at the button part, pleading not to be hooked up!   I dread the day he asks for the button to be taken off/out; or worse yet- if he tries it himself!  It confirms that we need to focus on his relationship with this tube- it needs to stay positive.  He needs to understand that it is for his benefit, and that it needs to be cared for but also that he needs it.  It's a fine line to walk with a 2yr.old!! 

We got him hooked up and a quick feed in him and I was optimistic that we could begin to get back on track with his feeds.   Over the next few days we were able to get a few added feeds in; so things were moving in the right direction --although he was still was refusing many feeds.   We can't fight this, so we just have to continue to keep it positive and concentrate on getting things healed so there isn't any pain for him....there shouldn't be pain. 

With the decrease in Alimentum RTF formula, we were seeing some decline in his energy, and know he needs the Vit.C to absorb his iron (as his iron stores are chronically low), thankfully his hemoglobin is holding (a recent lab check confirmed that).    So, we start talking about how we have the compounded Vit.C (beet root derived) that we still have not trialed yet, if he is only letting us hook him up 1-2x/day, we could at least maximize the Vit.C amounts with the Vit.C supplement.  Sunday afternoon, we decide that a discussion on Monday with the GI is due.  We aren't meeting his needs with the decreased feeds and we also need to follow up with Surgery as we're concerned over the growing granulation tissue again on the can we be moving in the right direction and still have so many things to challenge it?   We're trying to be patient.....

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