In regular life I tend to be a tad impatient with my sweet
children. I have a “bit” of a lead foot
when it comes to driving my smoking hot minivan. I have a hard time letting bread rise for as
long as it really needs to…This impatience has been an issue for me at times in
this wild medical journey with our boy.
Waiting for answers, waiting for a heart, waiting for him to rally from
illnesses, waiting for appointments, waiting for meds to be filled, waiting to
discharged from the hospital (why does it always take hours??) and even waiting
for cars to figure out how to move through the Duke parking garage. Yes, there is A LOT of waiting. Sometimes we handle it well. Sometimes not so much.
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| MR. GOLD. a really special person at Lego found Heath this treasure, which made our whole hospital experience so much better. we will be forever grateful. |
This fall has not been any different. In late June, Heath had a really bad episode
with his gastroparesis while we were at the beach. We came home and saw our GI specialist at
Duke. After our appointment, she called
and said, “as I was looking over Heath’s records again, I noticed that his
liver enzymes have been fluctuating for quite some time. I think I would like to take a closer look at
that to make sure we aren’t missing something…”
An ultrasound showed a “slightly enflamed” liver. Now we had to get to the bottom of it. So, we moved to multiple rounds of bloodwork
(one time he had 14 vials of blood drawn at once!) to rule out any kind of
illness or infection that could affect those numbers. When the last round came back negative, I
knew what was coming next. “We’d like to
do a liver biopsy.” Regardless of why
you are doing the tests, no one EVER wants to hear that “b” word. It
breeds anxiety, even in the most calm of people. Once it was scheduled, it took another month
to actually do the biopsy because of some other bloodwork (clotting factors)
that came back out of sorts. Poor guy
has had so much bloodwork in the last few months. Alas, they finally did the biopsy on Nov. 22—which
requires an overnight stay (which we hadn’t done in almost 2 years!!). It has taken 2 more weeks of waiting for
results, doctors to confer, and then to talk with the different specialists
involved—but we finally have a beginning of an answer. They believe that one of Heath’s medicines
may be causing a “slight injury” to his liver.
Ultimately it is a good answer because it means that there is not
something else wrong with his liver. For
those of you who have been very patient in waiting for us to share the results,
thanks! We’re celebrating this small
victory. Now, of course, we get to hurry
up and wait to negotiate the delicate balance of medicines. We’ll take that answer, though. We’ll be getting to work on this in the next
few weeks.
In the meantime, Heath has been doing really well. You would never have known any of this
testing/worry was going on if you had just seen him. He is loving kindergarten, learning to read,
riding his bike, running around with his buddies and creating amazing “custom
pieces” with his Legos. We’ll take that
as well. We’re all doing quite well—EB is
getting to be so grown up and loves school and life. Wilson is growing like a weed and is the happiest
baby I have ever known—even when he wakes multiple times during the night (we’re
working on this—there is a big of sarcasm coming from this tired mama). Life is pretty darn good.
And what I have realized is that on this crazy journey, we’re
just going to have to figure out how to wait well. We’re going to figure out how to balance the
constant worry about what is happening health-wise with the joy of small stuff
and the gratitude that comes with realizing that we even get to enjoy pretty
regular days together. Some days we do
this better than others, of course. We’re going to have to figure out how to
answer questions about how we’re/Heath is doing (sometimes “fine” is actually
fine and sometimes it is not, but we’ll tell you what we can deal with in the moment).
5 years ago in the morning on this day we weren’t feeling very sure that we’d
ever get the chance to live day to day with Heath. It was a very different kind of waiting. Frankly, I couldn’t have even imagined being
able to sit here and write this. And
then in the evening we heard that they might have a heart match. And then some really amazing parents, in the
midst of the worst moments of their lives, gave us a gift for which we can
never truly say “thank you.”
Advent is a season of waiting. Waiting for the One to break into the world
and make all things new. For our family,
we always make our way through this season with a whole new understanding of waiting,
with both heavy and grateful hearts, and full of anticipation.
We wish you each blessings, and huge amounts of patience, as
you make your own way through this season.
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