We know many of you have been eager to hear the result
of our feeding tube switch; I've thought many times
about sitting down to send out an update, but as is
often the case with Eliza, nothing seemed certain for
a good long while, so I thought it better to see how
it all played out first.
We are now breathing a sigh of relief at the end of an
unsuccessful experiment. As you'll recall, about a
month ago we decided to try a new kind of feeding
tube, one that bypasses the stomach completely and
delivers formula directly to the intestine. Bad idea,
as it turns out. Yes, it did stop the vomiting, which
was the goal; no, it did not come anywhere near
slipping out of place, which was the expectation and
fear. It did, however, cause Eliza significant
discomfort (the reason is such a long explanation that
it's not worth going into), so much so that she went
stretches as long as 72 hours without more than a
catnap.
So, after some experimentation, many phone calls with
several doctors, and a few extra trips to the
hospital, we (almost) all agreed that it was time to
go back to the old system, which, though not ideal,
worked well enough. So that's what we did last
Friday: Eliza now has the same old feeding tube she
had, and the same old ain't-broke-so-don't-fix-it
feeding issues (i.e. vomiting frequently). We're also
trying some new feeding strategies to relieve her
significant gas, a problem she's had for a long time
now but which was emphasized by this feeding tube
switch; we've tried basically every medical option, so
now we'll just do the best we can with what we have to
work with.
I confess that this month-long experiment has been an
exasperating experience for me (not to mention, I
expect, for Eliza!). Rather than dwell on the
frustration, though, I've decided to focus on what
we've learned:
1) Eliza does retain minimal consciousness, which we
have suspected but have never been able to prove
concretely. She has clearly demonstrated that she
feels pain and has a predictable response to it
(namely, wild arm flailing). On a practical level,
the question of vegetative state vs. minimal
consciousness isn't all that important, but on an
emotional level, as her parents, it's pretty
significant.
2) In addition, we've been able to sort out the cause
of an odd behavior that we've not otherwise been able
to understand, that is, wild arm flailing = discomfort
from gas. This is a big discovery, as this behavior
has perplexed us, as well as Eliza's doctors, for a
while now. We've had our suspicions that this was
connected to the gas; now we have proof.
3) What I think of as a questionable "mother's
intuition" may sometimes be God's whisper: I had a bad
feeling about this procedure from the start. This
isn't the first time that one of us has had--and
ignored--an inexplicable feeling about something that
has turned out to be right. It's a good reminder to
pray and ask for answers...and then to really listen
for them.
4) We have learned--make that, have been
reminded--what our priorites are in caring for Eliza.
We will do what is right by God and for Eliza, and we
will judge any medical advice we receive against those
infallible measures. One of my hesitations about
doing this procedure was whether we were doing it for
the right reasons. After all, Eliza isn't all that
bothered by the vomiting; we are. As it turns out,
doing what was best for us (stopping the vomiting)
wasn't necessarily what was best for Eliza. Though
the doctor who recommended this procedure sincerely
had our best interests (more sleep) at heart, we
forgot for a moment that we don't decide how to treat
Eliza based on what's best for us.
5) Our beloved pediatrician is a gift. Time and time
again he has walked through Eliza's challenges with
us, Saturday phone calls and mounds of emails and
endless consults with specialists notwithstanding.
Aside from being a really good and really well
connected and really dedicated physician, he serves
the same Great Physician as we do. He understands how
that fact guides our decisions, our plans, our hopes
and dreams for Eliza.
So that's where we are: back where we started a month
ago, grateful for what we've learned, glad this
experiment is over. Somewhere in the midst of all
this, Luke graduated from preschool and informed me
that he didn't want to have summer vacation; he likes
school too much and can't wait for kindergarten.
Sam's just weeks away from summer vacation (and ready
for a little summer break!), and I'm itching to get to
the pool...life with the dixiejax!
We are grateful for each of you and your prayers and
support, this day and always! "This is the day which
the Lord hath made; we will rejoice and be glad in
it." Psalm 118:24
With love,
Daniele for the dixiejax
