When we
went to the ENT last week to get Orson’s nasal polyps checked out the scale
said he was under weight three pounds since our last hospital scale weigh in. From
then on 20 percent of me was listening to the ENT talking about using a
combination of meds in attempt to shrink the polyps and put off surgery for a
while and the other 80 percent of me was going in to red alert panic mode at
the weight loss. My sleep was minimal that night as I wondered what I could do
more to help my buddy catch back up to where he was and move ahead. Sleep would
not come, until finally the right idea rolled to the front of my brain. Stop
fighting this g-tube. Stop pretending he only needs night feeds. Stop avoiding
the reality of this situation.
That
night I made a solid decision to get Orson to do some g-tube calories every morning.
It was going to be a big emotional daily morning battle. And believe me another
daily morning medicine battle is the last thing we need around this house. We
tried to do it when he first got his button in 2015 but he really hated
watching us do it. He cringed to see that syringe being flushed into his stomach
and it put him into hysterics every time. He was doing so well at his night
time sleeping feeds that I decided I would stop trying to push the feeds during
the day. But now that I see him dropping back down I just kept thinking that I
HAD to make this happen. I repeatedly flashed back to that AWFUL HPV vaccine commercial
that is on so much right now. You know the one with the little boy shown in a
backwards timeline from cancer to before cancer ending with him saying, “you
didn’t know about this vaccine right Mom? Did you? Did you.” Like ANY mother or
father who could have prevented their kid from getting cancer wouldn’t have
tried. What a horrible marketing campaign and scare tactic. Anyway I kept
picturing Orson as a spindly teenager and then as a grown man asking me, “Mom
why didn’t you try harder. I literally had a straw that led straight to my
stomach. Didn’t you know that calories would help me get bigger? Did you Mom?
Did you?”
So the
next morning I poured one half of a cup of half and half out and syringed it
up. The biggest syringes we have are 60 cc syringes which is 2 ounces or ¼ of a
cup. I laid those two syringes out in front of Orson as he was sitting for the
30th minute in front of the tiny little breakfast he had been
struggling to eat (I think it was one boiled egg that day) and said, “Were
doing this buddy. We have to. Your body needs more food that your mouth can
give it.” The panic began. The hysterics commenced. The cries of “please stop
Mom I’m going to barf, oh mom my stomach hurts” were heard. We got through
about three ounces of half and half that morning. He stood up hunched over and
moaning. He said how much it hurt and that he wouldn’t be able to play on the
playground for morning recess.
I was
so worried about him. I hated it. I hated to make him so upset before school.
He forgot his backpack and eye glasses. It was a rough morning. I called the
school nurse and told her what was going on and what I was going to start and
asked her to please keep her eye on him when he came in to see her before lunch
for enzymes.
As the
mornings went on of me trying to get Orson to let me use his button (g-tube)
for a breakfast calorie boost the magical combination of Charles helping Orson
instead of me happened one especially busy morning. That quickly evolved to
Orson doing it himself. Today Orson syringed the full 8 ounces of Pediasure 1.5
cal per mL himself. This gave him 350 calories and 14 grams of protein.
Potentially the most calorie rich breakfast he’s ever eaten in his life. I also
had gotten those adorable 2 ounce probiotic shots at Costco for him and he sent
one of those into his stomach too. Now here is a boy who a week before was in
the depths of despair over 3 ounces of fluid being put through his button who
now just sent a little under 12 (he did some miralax Gatorade too) ounces
through all with his own two hands. He stood up and immediately started running
around the house. I watched him run laps and be crazy on his playground at
school before the bell rang. My heart was singing. It was another incredible
miracle I was able to watch with my kids and their health challenges. The
impossible again became possible and will soon slip into normal because of
faith, effort, prayer, and the power of a loving Father in Heaven.
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I tell you what marketing campaign I am a fan of, and its this
giraffe. Orson thinks he's hilarious.
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Orson appreciated I showed him how much 8 ounces was
to him in a relatable way. He helps make cookies and this one cup measurer helped him see 8 ounces less
scary that 4 syringes.
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| 4 syringes 2 ounces a piece may as well have been 5 gallons. It was very overwhelming for him to see it this way. |
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Here is my happy kids playing on the before school playground! Hooray for that big smile
and not a hunched over in pain 5 year old.
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