So the holiday season is behind us and life is getting back
to its “normal” routine. The kids don’t
start back at school until Monday so that leaves some opportunities to take care
of a few appointments that are easier to accomplish when the kids aren’t in
school.
Today we met a new Doc.
My son Russell has had intermittent GI issues for most of his 9 years of
life. After a particularly nasty bout we
got a referral for Gastroenterology. Our
appointment took place earlier today.
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| The official Emoji of Gastroenterology |
I’m writing this post to remind myself about all of the
quirks and nuances that have just become a part of our "normal" life. Things we don’t think about any more or have intentionally
forgotten. The small things that
stack up one on top of another and result in making our lives so complex. I’m sure there are many who can relate.
The first reality check was on our drive to the hospital and
realizing how long these issues have been around. Russell’s GI issues have been with us going
right back to when he was a baby and shortly after his transplant. Given the complexity of his health issues
there are many reasons he could have GI issues.
It could be medications, diet related, side effects of his serious health
issues…the list goes on. The bizarre
part of this issue is that it has been with us so long and for the most part
ignored. We always had bigger, more
serious issues going on. A mild bout of
diarrhea now and again was always dwarfed by other “supposed” more serious
issues. It is realizations like this
that make you think you need to go back for remedial parenting school. To give you an idea how long this has been an issue I realized that I wrote about this years ago in a previous post...from 2011. Battling # 2 - Mar 2011
We expected our appointment with the Doctor this morning to
be more or less a “meet and greet.” This
is a new GI Doc and we expected her just to want to get familiar with
Russell. Given that we aren’t currently
having issues at the moment we didn’t think there was a great deal of urgency
to this appointment.
After getting settled into the exam room we met the nurse
clinician, the Doc and a dietitian joined us.
I do appreciate when a team is prepared.
They had all of Russell’s information readily available and they had a
clear understanding of why we were there.
You can’t always assume this happens.
The second reality check was reviewing and providing some of
our history and past encounters with GI.
We discussed our past clinic visits and various tests that were done
over the past years. The issues we have
had in the past and how they have changed over time. Reviewing this information is a daunting task
and time consuming. We probably were at
it for about an hour. That is a lot of
history for an ailment that is merely a footnote in Russell’s chart.
This was a good review of all of the issues our little guy
has had and how they are all interconnected.
Too much sugar in the diet does nasty things to the gut and messes with
the blood sugar. However, when your
kidneys are compromised one Doc is telling you to push the fluids. When your son refuses to drink anything other
than peach juice with is loaded full of sugar it presents many
complications. For years we have had to
do a balancing act with diet, medications, behaviour…over and over we had to
adjust and adapt our approach. This was
all made even more complicated by a young child who is always changing and
growing.
I appreciated the appointment and the patience and time the
Doc took in listening to us; and trust me there was a lot of listening. Overall this was a productive appointment for
all of us. However, as I write this I
think about the many short comings of this kind of approach to caring for a
medically complex child.
GI is now the 6th specialty that my son will see
on an ongoing basis. We do these
appointments on a 6 month cycle. That
means that in one year we will have 12 appointments just to sit down, have a
chat, and kick the tires. These
appointments usually come with tests of various form, which mean return trips
to the lab etc. This does not account
for the unplanned trips due to normal illnesses or other complications coming
up. All of this time and effort is
simply to maintain the status quo. To
add to the complexity; if one Doc orders a new med or new treatment, invariable
the rest of the team has to be consulted with to ensure their “silo” is not adversely
affected by said treatment.
It is this complexity and constant back and forth that
results in a GI issue that can conceivably result in serious harm going
unchecked for years in spite of almost constant interaction with the health
care system. A startling realization.
So today was another reminder that we aren’t “normal.” We have a unique experience and our path ahead
remains uncharted. A very important
realization as we start a New Year. A
chance to reflect, re-evaluate and keep moving forward. One foot in front of another.
