Saturday, January 12, 2019

A New Year - All New Challenges

A few years ago i remember a conversation I had with another parent who also has a son with a heart transplant.  I recall him saying how every once in a while, before heading to bed, he would go to his son's room and pause for a few moments.  In his mind he would reflect on the entire transplant experience and think to himself. "Wow!"

On December 30th, we celebrated Russell's 10th Transplantiversary and when we think about all that has transpired in the last 10 year...we have our own "wow" moment. 

It's nice that our anniversary of Russell's transplant coincides with the dawning of the New Year because it feels like we hit the reset button on a few different levels.

The funny thing about leading medically complex lives is that just when you figure things are under control and that things are heading the right direction.  Something usually happens as we hit the brick wall of reality.  We just have to roll with the punches and move on.

This week was a great example of that.  A great example of the highs and lows that we experience.  In this week alone, we started a reading program, did blood work, got called into the school twice, had a nephrology appointment,  an appointment with our family doc, started two new meds, discontinued another, we have a speech therapy session this afternoon, a few other school activities, and music lessons.  Somewhere in there I managed to go to work and get a multi million dollar project approved.  This was one week, and next week we will do it all over again.

So, as we approach 2019, we have many great aspirations for the year but we know that many things will happen that blow up a lot of our plans.  That is just the way it goes.

2019, will bring lots of new challenges, but it is important to realize how far we have come.  It is really interesting to talk to Russell about his medical experiences.  Now that he is a little older and has more understanding of his situation.  He has made huge strides this year in understanding his own medical reality.  His perspective is so different than mine or his Mom's.  Every negative experience he has ever had related to his health has been related to his transplant.  Why does he have to get poked so often and why does he have all of these appointments with doctors.  All because of his transplant.  When you think of his transplant through his eyes you begin to understand why he isn't such a huge fan of his transplant.

Over the past year, Russell has been asking a lot more questions about his medical reality.  We talk about his medications.  We are teaching him their names and what they do.  It requires some creativity to explain what happens if he were to stop taking his anti-rejection medications.  Looking at life through the eyes of a 10 year old is an interesting experience.  No doubt there will be many interesting questions yet to come.

It is also interesting to teach him some independence.  At some point in time Russell will have to learn how to be his own advocate.  Even now, he does his frequent trips for blood work almost completely on his own.  All I do is provide transportation and our medical card.

As much progress as Russell has made this year, we have seen a significant decline in Susan's health.  Without getting into the details and lengthy explanations.  It isn't good and it is unlikely to get better.  Failing hearts don't get better.  The only thing you can do is trying to minimize the damage.  This is my own opinion here, but I think we are at a tipping point.  I think I know what is ahead, just a matter of convincing Susan's doctors of that.

This WILL be an interesting year.  In spite of all of the challenges - we will do everything we can to enjoy every moment.  If there is anything we have learned these past ten years is that every moment is a gift and to do everything we can to enjoy the moments we have together.

 "For I know the plans I have for you - this is the Lord's declaration - plans for your well being, not for disaster, to give you a future and a hope."
- Jeremiah 29:11  CSB              

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