So our theory with Orson’s g-tube feeds is we want him to be
able to sleep without it for as much time as possible at night and for that
reason we run at a feed rate which will end his feed at about 1:30am so we can
unhook him, help him get to the toilet and then go back to bed without a tether. It’s totally normal and we all basically
sleep walk through the process. Lately though things have gotten a little
crazy. It started a few weeks ago. I woke up to the alarm on his pump screaming
at me through the monitor next to my bed and immediately I smell it. Shockingly
foul but I’m so tired and in sleep walk mode so I remember actually thinking, “whatever
it is I’ll find it in the morning and clean it up.” But as all things foul in a
household full of kids and a dog you can’t put off the funk, it always always
finds you. As I walked back into my bedroom from finishing up with my g-tube buddy,
using my cell phone light I feel pulled one step farther from where I need to
go to land in my bed. My stutter step tracks the cell phone flashlight onto a
medium sized pile of poop next to my bed. Fantastic. So that is the beginning of
the foul things in the night at our house and also the night I was pushed by an
angel, because heaven knows stepping in a pile of my
sweet-little-old-lady-cocker-spaniel’s poop on the carpet at 2am would have
sent me into a fit of rage.
More seriously and recently my g-tube buddy has experienced
many foul things himself at night. Mainly throwing up and pooping multiple times
a night. It all started the first weekend in November when I was scheduled to
go out of town with my oldest daughter to her school science camp. It really
hasn’t gotten a whole lot better since then besides the vomiting has stopped
and I’ve become a tyrant with his digestive supplement routine to try to alleviate
some of his pain and discomfort. But this normally great sleeper who can and
did two pouches of formula a night like a champion is down to one and some
change. In tandem with this night time awfulness like a woman who lost her
sense of reason I began to watch the second season of a very intense show with
my husband at night before I went to bed. So now even when I’m expecting it a
panicked six year old sneaking up on me and whisper screaming “MOM” into my
face multiple times a night is extremely unsettling. Were all walking on a very
frayed rope these days. I’m thankful that at least the second season ended in a
very satisfying way, except for Bob. Poor Bob.
But the silver lining’s are plentiful. His stomach x-ray shows
no blockage like last year. Which leads us to believe that his pain and
discomfort and cramping and night time trouble are from the puss and mucus
dripping into his stomach from his extreme sinusitis combined with his nasal polyps
all working together to sabotage our son’s health and ability to breath clearly.
Also on a thorough clinic visit last week he literally blew everyone away with
his PFT (pulmonary function test) scores which were as high as 123. An unheard
of personal best for him. So while he is devastatingly loosing weight right now,
can’t breathe through his nose, has crazy chapped lips, trouble in the bathroom
all times of day and especially at night, isn’t getting enough sleep…..even
with all of this physical chaos his lungs are strong. And this my CF team
assured me is a huge and definitely the biggest goal of a CF body is to keep those
lungs healthy.
So now we wait for adenoid/tonsil/sinus scrape/bronch
surgery in December with a hope of finding some big time relief for him after
he heals up from it. We are really working so hard to cheer for our boy and
keep him intake-ing as much caloric fuel as possible as we wait out surgery day.
When Heavenly Father created Orson he made a strong, kind, and especially
joyful soul he’s got so much going for him just not nose breathing right now.
Thanks be to Heavenly Father who gives us the silver linings amidst the rain.
How very miserable it would be without them.
