Wednesday, April 29, 2009

Flashback October 31, 2008: Coarctation of the Aorta Artery

I've wanted to write about this for quite some time, but I have a tough time getting the words out. It was a really scary and draining ordeal that I wouldn't wish upon any little one or their parents.

A few weeks prior to Halloween, my wife took my son in to see the pediatrician due to him picking up pink eye from one of the neighbors boys. It was during this visit that we heard the first words that nobody wants to hear. The doctor was listening to his heart, and heard a murmur. She felt it was serious enough that we should make an appointment with a specialized pediatric cardiologist as soon as possible. Within a week, my wife was at the UC Davis Medical Center where my son would undergo a echocardiogram.

I remember it well. I was with my daughter outside her ballet class when I got the call from my wife. She was on her way back, and didn't want to talk on the phone. She'd meet me there and we'd discuss it.

I don't know what was worse, the reality that I was about to be told, or waiting there 15-20 minutes wondering what was going on. Finally, after what felt like an eternity, she was there sharing a sketched diagram that the doctor had used as a visual aid to explaining the problem to her. Just above the heart, the aorta artery comes out and feeds the blood to the body. On the lower portion, right after where it splits off between the upper portions of the body and lower portions, a narrowing of the artery called a coarctation was present. This causes low blood pressure in the lower portions of the body, and a higher blood pressure in the upper. Complications from this occur later in life as the heart has to work harder to pump blood through the narrowed portion. If gone undetected, and/or left untreated, the average life expectancy is only 35 years of age with many dieing much younger and 90% by the age of 50.

The seriousness of it all hit me like a bag of bricks, and I was left stunned, shocked; not wanting to believe a word of it. All while this discussion was going on, my eyes kept going to my son; running around, climbing on everything, a model of what I believed a healthy year and a half boy should look like. How could this be happening?

The following days were a blur. We met again with the doctor in a week, and he went over what he explained to be the only option, surgery. The good news is that it was not "open heart" surgery we were facing, where they open the chest and hook the patient up to a machine to pump the blood. For this type of procedure they would come in from the back inbetween two ribs, clamp off the artery and remove the portion narrowed portion. It is then quickly reattached and the clamps removed to once again allow blood to flow to the lower portion of his body. I remember the words he said, probably to make us feel better. There's only about a one percent chance of complications. One percent...My mind imagined this surgery 100 times, and one of those times would end very very badly. That's the biggest one percent I have ever faced.

Barely home from this appointment, we get a call that there was an opening for his surgery, but the only day available was October 31st, and that his surgeon would not be able to schedule another date until after the new year. So here we were, only a week after getting the news, barely enough time for it to settle in, and we're already facing the surgery a week later. A day that we had planned for laughing and playing while going door to door in costumes had turned into something far scarier than I had ever faced on Halloween or any other day.

The day came fast, and we found ourselves getting up early packing the car and taking our son to the hospital. Every ounce of my body wanted to turn the car around and just drive away, somewhere, anywhere but here. Anyplace but this reality. It just seemed so unnatural to take our healthy boy and expose him to the risk of a serious surgery. My mind raced, and my thoughts were filled with scenarios that something would go wrong and we would have cheated him out of many many healthy happy years of his life. How could I live with myself if this happened? Ultimately the voice of reason in us was that if we could meet the man he'd become, no longer healthy and facing a premature death, wouldn't he have wanted to face the somewhat small risk (if any major surgery can be considered small risk) now, and have the opportunity to live a full healthy normal life. It would be supremely selfish of us not to give him that life.

Well, we made it there, and though time passed slowly, before we knew it they were prepping him for surgery. I held him half naked wrapped in a blanket in my arms and tried to comfort him amidst the confusion and chaos. His meds were starting to kick in, and it became time to put him on the bed, as they wanted us to leave while they put him under and intubated him. I resisted leaving, and I got the feeling that some people thought it was because I was afraid and that I couldn't handle to watch what was about to happen anyhow. It had nothing to do with that. I didn't want to leave for the sole reason that I did not want him to see us go and become scared and panicked. Nothing that they could do would have any affect on me more than seeing him distraught, so I waited until it was clear he was relaxed and heading off to sleep. Then I left, upset that we were being forced to leave his side, and fearing for the risk of never seeing him smile or hearing him laugh again.

Leaving the room for a brief time while they intubated him turned into over an hour in the waiting room. I felt like a caged animal pacing the room, wanting to lash out at anyone that got in my way. Time just seemed to go on and on and on, until finally we were told he was about to be moved to the surgery room and that we could accompany him on the way. Seeing him unconscious and hooked up to a breathing machine just amplified the reality of the situation. Thoughts of taking him in my arms and running far away flooded my mind again. I was overcome with so many emotions, that it just is not describable. Then they rolled him off through the doors and we were left with nothing but fear and hope.

The next couple of hours were the absolute longest in my life. We seldom spoke, and spent a lot of time watching the doors and holding our breath. A doctor came in and spoke with an older woman in the room. That's when I learned that seeing your doctor enter one of these rooms was never a good thing. I hoped and hoped to see someone soon with news. Anyone but the surgeon.

After what felt like an eternity, the head nurse entered the room with a smile. Things had gone perfectly without any problems, and they were in the process of "closing up". I don't know that I've ever taken a bigger breath in my life. It still felt too premature to be fully relieved, but it felt a whole heck of a lot better than I had felt just moments prior.


After another hour or so we were guided back to the Pediatric ICU where we'd be spending all of our time over the better part of the next week. We stayed in shifts where one of us would be there for most of the day and all night, then the other would take over. I needed ever second of rest on my "off nights", as there was little to no rest to be found in the ICU.


His first days he was weak, tired, and extremely drugged up. You'd think he'd sleep a lot in this condition, but he was very restless and while in the ICU if there is any given it's that the moment you close your eyes is the moment somebody walks in the room. X-Rays, examinations, beeping machines, and medication deliveries never seemed to end. The care in the ICU is tremendous, but there came a point where the one thing he needed to get better was rest. Something not to be found here. By day four I pleaded with them to move us to a room, or just let us go. His vitals were stable, but the only thing holding us up was his blood pressure being a bit too high and they were afraid to turn down the intravenious medication for it. That paired with the fact that he was fighting taking his oral medications. I literally wanted to scream or cry or rip my hair out if he wasn't given the opportunity to rest soon.


That is when the surgeon entered the picture again. I heard him discussing the issue with the lead ICU doctor and finally he raised his voice and said "Look, just turn off the drip and I guarantee his blood pressure won't go up. He needs to get off of this and into a room where he can get a good nights rest, then his blood pressure will go down". I was seriously teared up and I wanted to burst through the curtain and give the guy a hug. I still cry when I think about everything that he did for my son.


As you might guess, they turned off the IV, and low and behold his blood pressure did not go up. It was still higher than they wanted, but it was stablized. The next hurdle came when they said they would move him to a room in the child recovery ward, but that none were available right now. I just wanted to curl up and die.


Fortunately later that night one became ready, and we were whisked away from all the lights, beeping, and attached wires, to a quiet private room with only a blood pressure cuff on his leg. The room came complete with a pull out chair that converted to a bed for me. I felt like we were staying at the Hilton, and for the first time in 5 days he slept for about 5 or 6 hours in a row.


The next morning I paraded him around the ward in a fancy red wagon and we discovered the play room. He took his first shaky steps, and that glimmer in his eyes began to shine again. Later that day we were given the okay to take him home, and by days end he was chasing his sister around the house screaming and laughing. My wife and I stood and watched the two of them filled with joy, exhaustion, and a million other emotions.

Once home we got the oral meds under control. Sometimes I think you just need to give it to the parents and let them get it done. With all the fear that was being expressed at the hospital that we might have a hard time, we simply pinned him down and made damn sure every last drop made it in him. Within a week he was taking it without a fight, and within a few months he had been weaned completely off of it.

Now he's just a typical two year old boy, running, screaming, and laughing with his older sister, with a peculiar looking scar on the left side of his back.

Eye Contact


Steve said...

Rik -- A wonderful heartfelt story! There are people out there facing similar issues -- be sure to let your doc know about this blog post so he can point them to your story for a bit of teaching comfort. So good to hear a story with a good ending, even if the middle is heart wrenching, ... especially!

Amy said...

Thanks for your story! I have a 2 month old and we are facing this surgery. We are very scared! I searched the web for people in similar situations and found your site.

AlwaysJanuary said...

Hi Amy. My heart goes out to you and I'm hoping for a successful operation and a speedy recovery.

We were told that by the numbers this is a very treatable condition with a high success rate, but that still didn't prevent us from feeling very scared as well.

We got through it though, and now our son is in Kindergarten and through yearly checks we're assured that everything went extremely well and he is continuing to do great. He has not been limited in his activity in the slightest bit.

I hope for the same results for you!