So I've been crying like a beast. All day, all night, when I'm eating,
when I'm fasting. While I'm sitting, while I'm lying down, while I'm
going for walks. Doesn't much matter to me, I'm just gonna cry. The
doctors aren't sure why I'm so miserable but they have alot of
theories. Some think I might be lactose intolerant, others say I might
be suffering from acid reflux. Some say I'm eating too much, others say
the food is wrong. A recent X-ray I got today showed a buildup of
"Diaper muffins" a.k.a. poop, in my bowels and digestive track. That
could explain some things, or it could simply create a whole new batch
of questions.
Since the answers are no forthcoming, we continue
to wait. I am now on regular head pokes for blood since apparently
that produces the most accurate Lactate results. since starting the
head pokes my Lactates are 7 and up, the most recent was 9.6! That's
almost as bad as my days in the Critical care unit. The oddity is that
my PH level is staying normal, in fact it's actually very good!
So
medication-wise I'm now on reflux medication, tylenol for pain, stool
softeners, oval for gas, my regular mitochondrial vitamin cocktail,
copper, and levo-carnitine. Seems like quite the chemistry experiment
going on in my tummy.
The nurses have been trying to vent my
tummy to remove some gas also. This is done by using a large syringe
with the plunger taken out. The syringe is attached to my tummy tube
and the contents are allowed to back up into the open syringe. Any gas
is then free to escape as bubbles and the good stuff stays in the
syringe and can be re-inserted into the tummy! Sweet deal :)
Daddy
came to stay with me again so mommy can have a break and go sleep in a
real bed for the weekend. Just in time for daddy's arrival, I had
started my tylenol and so I finally stopped crying. Hopefully the
weekend will be smooth sailing. Sadly, discharge still appears to be a
distant dream.
I'll keep you all posted over the weekend!
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