I'm still not sure why I was so down on Saturday.
You'd think, after 17 days in St. Mark's and another week at PCMC, I'd
just be ecstatic to be home, with Sam, and not where I thought we might be last
Monday. But I was down. Very down. Low enough that Elisa kept
asking me what was wrong and I very nearly committed the sin of answering with
a "I'm fine". Don't worry...I never got to that desperate
place. Maybe my naivety had been shattered, as a week before I had
triumphantly headed home from St. Mark's, only to have my world crash on the
rocks of reality two days later. The idea that we'd come home and things
would magically get better were over. I was faced with a more daunting
task. To accept that our reality had changed. And it had changed in
every single way.
The fact remains that Sam has a long road to
travel. His pulmonary hypertension is only controlled at
"manageable" levels right now. He's still on Sindenafil. He's
still on oxygen. And he still has a very serious fistula that is sitting
in his brain. No, normal is about 17 leagues out from us right now.
And I think that reality might have been hitting me. Sam was and is
still sick. Yes, we are hopeful of a full recovery. Yes, we will do
everything in our power to make that happen. But the reality is...we are
helpless to Sam's future. It's up to him, his Cardiologist, and a
fantastic group of neurosurgeons to write Sam's next few chapters. We
simple stay the course. We monitor his oxygen saturations. We feed
him to continue to grow. We process our medical news. And we wait.
Elisa was wonderful as I struggled through my day. She was patient,
not pushy. But she kept inquiring as to why I was down. Eventually
we talked about it, and I expressed my fears. And my worries about the
future. What if Sam didn't get better? What if they couldn't fix
his brain without doing damage? What if we were managing him for the rest
of his or our lives? It was a dark place, and I was failing to see any of
the positives - like the fact that we were home. I was able to hold Sam
whenever I wanted. He was starting to coo. He couldn't stare long
enough at his brothers. And his mom...his beautiful mom...had her baby in
her arms.
Last week at this time, I wrote about a new kind of
fear that I was experiencing. That fear has been replaced with a new kind
of reality. One that doesn't sugarcoat our situation or the path that
lays before us. Instead, it is realizing that Sam's prognosis of being
cured is down the road. Elisa and I will wake every day and go to sleep
every night, our minds heavy with the worry of Sam's condition, his current
progress (or lack thereof), the emotional stability of ourselves and our other
children, along with a little thing called life...you know, bills, work,
friends, school, etc. That doesn't seem to take a hiatus when you'd
really like it to. That's not to say we haven't enjoyed having Sam home.
I love it. It's calming. I don't miss the hospital one bit,
and I am attached to our bed like it's my life raft...hey, I've even started
discovering what sleep is like! But our reality is a stark one - until
Sam is deemed cured and normal, the road is only in front of us, regardless of
the tumult of a road we've already travailed. I'm no longer scared.
I'm resigned to the fact that fear is now as normal as breathing in and
out.
To give you some insight into this new reality, let
me just illustrate three examples we've experienced in the last two days.
The first came at about 7:00pm on our first night home. The
telephone rang. By this point, I recognized any number from St. Mark's or
PCMC. This one was from PCMC. And it was Dr. Doom...I mean, Dr.
Day. He was nice enough to be seeing how Sam was, and if the transition
home had gone as expected, but then we got down to brass tacks. He was
surprised that the neuro team was considering brain surgery over embolization.
But he followed that up with a "but I understand that they want more
time...because the brain is too important. You only get one shot to make
it right". One shot. That's comforting, if not obvious.
He also told me that while Sam's pressures were under control, he lived
every day with the same pressures as a jogger. So where you and I sit around
like vagrants (hey, welcome back to our St. Mark's days!) at Pioneer Park, Sam
sits with us and his heart and lungs are working as if he just buzzed around
that park in a race. The Dr. also equated Sam's heart pressures to having
a hole in his heart, so when I inquired about how long Sam could go without
surgery, he told me that they waited 6 months to fix holes. That's what
he expects with Sam. I think his opinion is you don't want to put the
heart through much more than 6 months. If that's true, we would be
looking at a pretty tumultuous March/April timeframe next year. Spring
will be interesting, to say the least. Let's hope we're celebrating great
improvement as we head into summer. That would be a wonderful treat.
Dr. Day also dropped a few more gems for us to keep
in mind. When I asked how to know if Sam was doing well or struggling, he
said it was all about the weight gain. If Sam was gaining anywhere from
1/2 to 1 ounce per day (weighing 1-2 times per week), we were on the right
track. If he plateaued or started losing weight, we'd need to get him in
to be evaluated. Oh goodie...something else to worry about! Outside
of that, however, Dr. Day said that we didn't need to rush back to see him.
The plan for the MRI on November 6th was fine. If we could see Dr.
Day a week before (last week of October), that would be ideal. I asked
what we'd have in store...he said an echocardiogram, and potentially an EKG.
Otherwise, we just need to watch potential side effects to the Sildenafil
and keep moving Sam forward. If this isn't how you spend your Friday
evenings, I think you can start to understand how our new "reality"
is unfolding.
Example #2 came on Saturday morning...well, I'm
unsure if it was Friday night or Saturday morning. It just happened after
everyone was in bed and sleeping. Sam woke up to eat, and as we were
changing him, Elisa noticed that his left hand felt cooler than his right hand.
I initially equated it to how he was wrapped, and that we like to keep
our room a little cooler than the normal person. But when he woke up
again, his hand still felt colder. While Elisa fed Sam, I did more Google
searches, trying to understand what was going on. It wasn't until the
next morning that a new idea popped into my head. Sam's "warm"
hand was his IV hand. And it was swollen - there was a bump where the IV
had been. I started believing that perhaps his other hand wasn't cold.
Maybe his left hand was normal and his right hand was overly warm because
it's healing. We spend the remainder of the morning feeling hands and
fingers (without trying to worry). Elisa eventually called the
Cardiologist Fellow at PCMC just to make sure. He thought that it was
probably the IV hand that was abnormal. But every time we picked him up,
we were testing his hands. It wasn't until Sunday when I actually started
with Sam's feet. I felt his feet, then felt his left hand, and realized
they were very similar in temperature. Only the IV hand felt warm.
Yep, I'm pretty sure that's the abnormal one. But who knew that
Sam's temperatures in his hands and feet would be the prevailing topic of the
weekend? We didn't...but I think we do now. We'll be looking at
every single thing.
Which leads me to our secondary worry. We
watch and feel Sam's breathing all day, every day. We try to gauge if
he's breathing fast or slower. We look at his retractions and try to see
if they are less severe, or getting better. Yes, this is where we live.
I do think that his retractions have improved, but I also wonder if part
of our new reality will be looking for signs that aren't there. Or seeing
signs that mean nothing, but converting it to a major concern. Elisa had
her parents bring an old scale over on Sunday night and we weighed him.
It's an old scale, and probably not very accurate. But it told us
that Sam had lost weight. Okay, okay. It's not even a digital
scale. The chances of getting a true reading similar to what he had in
the hospital is probably zero. But this is where we live. For bad
(the hands) or for good (the breathing), Elisa and I don't just live with how
Sam is. We are evaluators. We are looking for signs of decline or
signs of improvement. Interestingly enough, our search typically matches
our mood. On Saturday, when I was Mr. Grumpy Gills, everything I saw
pointed to concern. On Sunday, where I found more hope, I was noticing
how much better his breathing was. It probably means that Sam is exactly
the same as he was when we left PCMC on Friday. But this is our new
reality. This is now who we are.
As for our new reality, we will spend the new week
melding it with our old reality. For the first time in a month, Elisa
will take the boys to school. I will attempt to resume my work schedule
and actually go into the office. I mowed the lawn. I went grocery
shopping. Elisa did laundry. We both attempted to clean the house.
The only real medical update is that we'll try to get into see our
Pediatrician this week. Hopefully, we can have Dr. Pete tell us to quit
worrying. Then again, depending on our moods, he'll either give us hope
or another pile of things to worry about. That, you can count on.
In many ways, I hate the fact that this is our new
reality. Because the fear of what's going on with Sam can sometimes cast
a pall over the rest of our lives. But when I look back at where I was
last Sunday...on the eve of the worst day of my life, I'm also grateful that it
is fear based in reality, not fear based in the unknown. And as Elisa put
it ever so succinctly yesterday, Sam's here. And he wouldn't be here if
the doctors didn't think he was well enough to be here. And if he gets
worse, they will make him better. And if he gets better, I can tell Dr.
Day "in yo face!" Whatever the future holds, our new reality is
clear. Sam is sick. Sam has a long road ahead. But I'll be
damned if we won't arrive at the day that I can write a blog that says the
journey is over. Sam's hell now in the past. And he can be a
normal, healthy kid, itching to write all of his own chapters across the globe
(and out of the hospital). I refuse to see any other end to this reality.
I can't. I won't. And, as we've known since he arrived, Sam
will be atypical. He'll surprise. He'll get better.
He has too. Because that's the only reality I'll
accept.
Brad
1 comment:
Thank you for these updates.
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