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 tube...how 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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