Wednesday, January 3, 2018

Reality Check

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.

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.

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