Carter’s peace from
pain lasted for all of 24 hours. WE learned after a GI appointment that he had
a stool impaction. So we tried to clear it. With Milk of Magnesia. With
Miralax. With enemas. With Dulcolax suppositories. He was taking Tylenol around
the clock and Zofran to help him sleep. We had another x-ray done. The
impaction was considerably worse. This entire time, over a week, we were trying
to clear him out, and he was going. Apparently it wasn’t enough. So we tried magnesium citrate. That’s the
stuff they give before a colonoscopy to clear you out. IT still wasn’t working.
He was still in pain. We saw the GI on Thursday, April 19. I practically begged
him to admit Carter and clear him out at the hospital. I was getting scared
doing this at home. He was showing dehydration signs and was still in a TON of
pain. The doctor said to wait another 2 to 4 days. If Carter was still in pain,
call and they’d get him admitted.
I called Sunday morning, as we hadn’t seen any improvement.
They got us a room ready at 1 pm. We were checked in and settled by 2:30. IV
fluids were started and blood work and x-rays were taken to give us a baseline
to compare his progress. The process of cleaning him out involves placing an NG
tube, a small tube inserted in the nose that goes down into the stomach, and
pumping him full of a product called GoLytely.
This works similar to a garden hose on a dried up pile of dirt. It
washes over the impaction, eventually ridding it all from the body. The first attempt
at the NG tube was a complete failure. They used no numbing agent, couldn’t get
it placed correctly and caused him to bleed. We made the decision to stop and
see if it could be done with some sort of sedation.
The next morning we met with an amazing GI, or so we
thought, who wanted to get Carter thoroughly checked out with GI,
Endocrinology, Allergy and Immunology to help find both the cause for the
impaction and look into his lack of growth. They were going to schedule a lower
endoscopy as well. The NG tube was successful
put in the second time around using medication to help Carter relax. The GoLytely was started Monday afternoon
around 3:30. It is supposed to take
approximately 4 hours to work. It took TWELVE hours before anything happened.
Is it because he was so backed up or because there is an issue with his bowls?
We don’t know. Why don’t we know? That’s the BIG question.
The doctors were great, until I mentioned FPIES and
specifically his shock reactions. Once I told them that, the doctors gave up on
helping us in any way beyond clearing the impaction. The lower endoscopy was
canceled. None of the specialists ever came to see us. The GI doctor NEVER came
back.
It took 36 hours for Carter to clean out. A painful process that I will spare you the
details. Just know it involved full linen change of the bed every time he
pooped. By Wednesday afternoon, Carter wanted to get up out of bed and play for
the first time since we got there on Sunday.
He was feeling and looking so much better.
The pediatrician working at the hospital came in to get a
progress report and to see about sending us home. What happened to the other
tests they were going to do? What happened to the rest of his care? She told me
that since he’s not really going into shock i.e. anaphylactic shock, that I was
unnecessarily restricting his diet. That his FPIES diagnosis wasn’t a REAL
diagnosis at all. His impaction was purely my fault for not feeding him and his
lack of growth was due to malnourishment.
She went on to say that we needed to have him followed by a
GI doctor who could help figure out his digestive issues and make a real
diagnosis.
Oh, you
mean the GI doctor who told us he was growing fine and to just keep doing what
we were doing? The GI doctor who told us there wasn’t anything wrong with him?
Ok, I’ll make another appointment.
Have we
tried Elecare Jr? Yes, he reacted to it. No, it wasn’t that he didn’t like the flavor;
it made him throw up and poop blood. Should I have continued it?
I asked
the pediatrician if she’d like to call the doctor at Stanford who gave us the diagnosis.
No, she didn’t think that would help her at all.
She
gave us the green light to go home and we RAN. Carter didn’t fit into their little box of
what was accepted, so instead of expanding their box to include him, they threw
him out. They pushed ALL the blame on me and walked away. We have since filed a
complaint with the doctors on staff and have a plan in place for any further
visits to that hospital. I won’t have my child’s care limited because some
doctor or 4, think I’ve made this all up. Type “FPIES” into any search engine
and you can see it’s a real issue. The word shock sent them running. So call it
whatever you like, but he goes completely unresponsive when he eats certain
foods.
I will say that the rest of the
hospital staff was amazing and made our stay as enjoyable as a hospital stay
can be. We have since found another Endocrinologist who thinks that the fact
that he hasn’t grown in almost a YEAR, is a BIG deal. She’s running some
further tests on his liver function as well. She had the same blood work
results as the doctors did in the hospital. The doctors looked at his numbers,
with levels that were troublesome, and dismissed it all. OUR pediatrician was outraged and dumbfounded
that anyone could look at his blood work and growth chart and NOT see a
problem.
We have an appointment with GI in
June and appointment at Stanford with our Allergist in late July. We are also
working on getting an appointment with a Stanford GI who might take this all
more seriously. Otherwise we will go into our GI appointment in June armed with
all the information she will need to take him seriously. Or we will walk out.
The gloves are off.
