Thursday, February 18, 2010

From the Heart


Tuesday night, I made a late night visit to a patient. It was midnight by the time I got home, and while the visit didn't last more than an hour, it took me an hour and a half to chart what I'd done. During my shift, the server for work was doing an upgrade. Remote users like me had to log in after the upgrade and make a few wireless transfers to install said upgrades. That took an hour. I couldn't wait to do it on the next day because my son had a doctor's appointment at 8 AM sharp and the treatments I'd done for my late night visit had to be charted for the next shift. I finished the upgrade and didn't get to clock out until 1:30 AM. I didn't fall asleep until sometime after 2. Ugh.

I got up at 6:30 in the morning to meet my son across town at the doctor's office. It was a meeting with a new Electrophysiology Cardiologist. A specialist in electrical conduction issues in the heart. Once again, we're traveling down this path to find a way to correct the aberrant tissue that makes his heart race--even at rest. The biggest problem here is that this little piece of tissue is within the heart's AV node--an electrical relay station that controls signals between the top chambers of the heart and the lower ones. Of course it has to be complicated. Would my family do things any other way?

The EP doc was late for our appointment. One hour late, to be exact. I forgave him because I liked him, and I liked him because he was honest. He can't do the procedure my son needs because he doesn't have the right equipment. My son needs cryoablation. He's failed radio frequency ablation. Once again, we've been referred to the University of Michigan to pursue a fix, but the fix is not without significant risk. With a lot of luck and not a little skill, he could be cured, but if too much tissue is destroyed during the repair, my son, whose symptoms are well controlled with one dose of a beta blocker per day, will end up with a pacemaker for life. He's only 21.


The conundrum here is that it's my son's dream to find employment with a government agency doing security and counter-terrorism analysis. Most agencies have a list of exclusionary medications and conditions. Both his medication and his cardiac diagnosis are on that list.

Dream busters.

The doctor was empathetic to my son's problem. He explained as best as he could that having a pacemaker would ultimately put an end to my son's dream job, too. He encouraged him to think about other careers before he explored a permanent, non-revokable cure to his problem.

Last night, exhausted and worried, I talked to my son about the referral. He wants to go to the U and explore the cure. Me? I'd prefer he stayed on the beta blocker for the rest of his life, but it's not my heart and it's not my life. It's his. These are his dreams that he has doggedly pursued for the past 4 years. He's stayed out of trouble because he hasn't wanted something stupid, like a minor in possession citation, to ruin his chances of a dream job. He's never missed a day at school. He's won a coveted government internship for the summer that many don't get because their background checks don't pan out. It would be a shame for a bum heart condition to ruin his opportunities.


I apologized to him last night. He wanted to know why. I said, "well I birthed you, and your problem is most likely genetic in origin." He told me, "don't be sorry--it's not your fault and as genetic problems go, it's not as bad as it could be. I learned that lesson from Rachel."

I think his heart is fine just the way it is.

A note about the photos...this was the cast on process for the Deep in the Forest Mittens. After an initial run with my handspun yarn, I ripped it out and cast on with the commercial yarn. My handspun was too bulky for this delicate pattern and would have yielded hand covers more suitable as oven mitts. I trusted the braided border video that though the yarn would tangle as the dark and light yarns helicoptered over each other to make the braid, they would untangle on the following round. They did. I'm going to trust that my son will make an educated decision about untangling his own mess in respect to his heart and find what's best for him.

Sigh...


20 comments:

Miss 376 said...

That's the hardest part of being a parent, letting the children live their own lives. We just keep on worrying about them however old they are. Hope a solution can be found to keep everyone happy

Miss T said...

Your mittens are going to be gorgeous. And I wish the very best for your son, that whatever he decides will be the right thing.

Stephanie V said...

Hard to stand back but your son sounds as though he has inherited your wisdom genes. I am constantly amazed at how wise young people can be. I'm sure he'll make the best decision for his life and dreams.

bettyjf1 said...

What a great kid! I'm so sorry about all this. I think he'll make the right decision for him. I know I'm off on a side issue here but HOW could that drug keep him from this job? It seems stupid..

clairedulalune said...

Oh my goodness Rudee, i am very sorry to hear of your sons situation. It must be soul destorying to want something like that only to be held back. He sounds like a strong capable young man who has a great head on his shoulders and who can put his hand to anything. He will find it! Loving the mittens and your amazing talent!

Brenda said...

Your son sounds like he knows what he wants out of his life and the best way to go about getting it. Amazing that he steered clear of all the temptations that young people can be leered into. He must really be focused on this career choice. Very impressive!

distracted by shiny objects said...

So sorry to hear this. Your son sounds as though he has a good head as well as his heart. He came by those honestly.

Gail said...

A very wise young man with a loving heart...I know he got that from you.

Rose said...

Oh my, that is the most difficult thing to go through; watching your child suffer. My oldest had/has scoliosis and had to wear a brace throughout her 8th grade year, then had a six hour surgery the summer before 9th grade involving a metal rod inserted alongside her spine and bone marrow scraped out of her hip. I think I aged exponentially during that year and I still cringe whenever she tells me she's fallen down. This is a long way of saying I am so sorry you and he are going through this. Best of wishes throughout it. Which is forever really, isn't it? But he does sound really, really grounded.

Kathleen said...

What a fine young man! What a wise mom. And Rudee, you are the vessel through which the genes traveled -- as we all are. His condition is in no way your fault. It can't be. You didn't pick your genes. Here's to your son's dream. And here's to you!

jeannette stgermain said...

A difficult decision your son has to make at such a young age! And he has to live with it for the rest of his life (probably). be of good encourage!

Crystal Jigsaw said...

I too think his heart is just fine the way it is. Well brought up, I'd say.

I don't really understand the workings of the heart even though I may have to learn now as Amy's father has recently been diagnosed with cardio myopathy and it could be hereditary. If you know about it I'd be ever so grateful if you could email me crystal.jigsaw7@btinternet.com
I've looked it up on the web but still can't make head nor tail of it and think I need to chat to the doctor.

But back to your son, there's a reason for everything in life. Perhaps something better is just around the corner.

CJ xx

Rositta said...

Rudee, you know I had the ablation almost two years ago and it appears to have been successful in my case. I heard something very interesting on the news a little while ago about ablation in younger people and the positive outcomes as compared to drugs. Your son has a right to decide his treatment as much as we as parents would wish otherwise. He has dreams and aspirations and I guess it's better "to try and fail than not try at all" (the old cliche).
Here's the link to the article although I'm sure you've researched it better than me...ciao
http://www.jnj.com/connect/news/all/20100127_100000

http://www.medicinenet.com/script/main/art.asp?articlekey=112730

Rudee said...

Thank you everyone for your kind thoughts.

Rosita, he has had ablation once, but the problem for him is the location of the lesion--right inside the AV node. If it was elsewhere, the risks would be lower. We'll see what cryoablation has to offer. Less tissue is harmed when it's frozen than when it's burned with a heat source, but there is still that pesky problem of the location. I'm sure for him that the use of a beta blocker is no fun, either.

If the ablation causes the AV node to fail, then he ends up with a pacemaker that will require replacement of the pacer itself or the wires every 4 to 8 years. That's quite an issue to deal with for a 21 year old when meds are doing a good job with symptoms.

Rositta said...

He's kind of between a rock and a hard place isn't he? I know being a cardiac nurse you know much more than I do, I just thought to offer my thoughts. I hope it goes well for him, I know what it's like to be a worried parent. I'm still worrying for my DIL as you know...ciao

Ruth said...

AS Rossita aid - a rock and a hard place. All you can do is supprot his decison and hold your breath.
Take care and look after yourself.

debra said...

lessons of the heart come in all kinds of ways. Sending love and light to you.
xo

Middle Aged Woman said...

Your son sounds like an amazing young man. Does his condition prohibit service in the armed forces? Gov't hiring is always preferential toward vets. And a good doctor is worth the wait.

Rudee said...

Middle Aged Woman, joining the military would be the route he wants to take, but his cardiac diagnosis is on their list of exclusions, too.

And hey! Don't I know you from the Colony?

Middle Aged Woman said...

You do! That's how I found you!