A Heartfelt Plea that is Actually NOT Adoption Related

I believe in serendipity because I watch the Discovery Channel. I know that sounds funny, but it makes sense in my insane, but ever so logical brain. OK, maybe ” making fortunate discoveries by accident” isn’t quite the right term, but I dislike words like fate or divine intervention, plus serendipity is much prettier. And sometimes, the way things come full circle, I tend not to believe that it can be all coincidence. My mother always said there was a collective unconsciousness in the world and this is where the Discovery Channel comes in; if we are all made of the same stuff, stardust, wouldn’t it mean that we are one on a cosmic level? Can’t that mean that sometimes, things come together like they are suppose to?

My Happy Accident of Cosmic Convergence

So yesterday I spent the day chaperoning a field trip for Scarlett. I’m not sure I knew what I was thinking because it entailed sitting on a school bus with 12 year olds and on the ride home they were highly sugared up 12 year olds, but it was to Howe Caverns and I had a hankering to see the caves. Now, I don’t really like caves and you will never catch me going “spelunking”, but I was pretty sure that I had been up to Howe Caverns when I was five as I have these real sketchy visuals of being in a cave. I was curious to see if it was, indeed, Howe. ( It was.) Plus it was nice to be the “cool” mom who does the field trip thing and see my dear daughter in action. Ah, another reason I am glad I quit the evil full time job.

So here’s the serendipity stuff: I ended up talking to Scarlett’s science teacher who besides being a cool teacher ( daughter loves science this year! Yeah!) is a gamer geek. So we are talking nerdy stuff and get into websites, social networking things and promoting stuff online. Then we discover that the drummer friend he had mention a conversation earlier is a mutual friend, etc. Scarlett’s all thrilled that by time we are off the sugar high bus, we are FB friends. So Rye picks us up and tells me that Garin was over the house getting his mail and was hanging with Tristan. Pleasantly enough he is still there when we get home and he mentions that he had Mr. Fox, too. So later on, we’re are chatting on FB following up with looking at the SEO on his gaming site ( he’s a podcast game reviewer) and I tell him that he had offspring #2, especially since he enjoys #3 and was happy to hear that #4 was still a possibility. (It’s very nice when you know that teachers enjoy your kids, though I do usually apologize for #2 as he was a bit more trying at times.) So it turns out that yes, he remembers Garin because they bonded over both having heart conditions ( which I did hear him talking about on the bus, but only half heard and I did mention Garin being a drummer, but didn’t think that they had crossed paths already!) So then, the thing that I said I would help give a social media push..turns out to be a geeky gaming fundraiser for children’s hospitals and one of the hospitals in the Children’s Miracle Hospital network is THE hospital where Garin had his surgery! Children’s Miracle Network Hospital treats thousands of children each year, regardless of their family’s ability to pay.

Which leads me to believe that helping Mr. Fox reach his fundraising goal of $500 for the Extra Life 25-hour video game marathon to raise money for the Children’s Miracle Hospital network is quite serendipitous.

Plus I never did write about my son’s open heart surgery.  So now I will.

My Son Was Born with Aortic Stenosis

It wasn’t fully diagnosed until he was 2, but his pediatrician heard his heart murmur soon after birth. It was hoped that it would clear up on its own as many babies have ventricular holes that do closed up, but his didn’t. So, we were referred to a pediatric cardiologist who did all the chest X-rays and EKGs and echo cardiograms. That’s how it was discovered that my oldest parented child was born with not three flaps on his aortic value, but two.

The two flaps of his aortic value, the one that does the greatest portion of work in the heart, meant that it did not close all the way and his heart had to work harder. Blood would seep back past the value that didn’t open fully or close fully which caused the murmur.  Luckily, Garin had no other symptoms of heart trouble except the murmur, so besides constant monitoring over the year, he had no restrictions or medications, just visits to various pediatric cardiologists based on the whims of his insurance company.

It was actually a really good thing that this was found especially since he had very little other signs such as lightheartedness or shortness of breath. This is the kind of heart condition that you hear about in the news when a basketball player drops dead on the high school court during the big game.  The initial murmurs are often missed and that’s some serious bad news.

When he was almost 14, we got the news that his heart was now being compromised and was showing signs that the valve was needing to be replaced. It was May of 2005. I was not blogging yet, so I only wrote about it on the various adoption message boards and those are now long gone.  I also took a huge break from all things adoption as preparing for your child’s open heart surgery is kind of a major big deal.

I was pretty terrified to say the least.

Preparing for My Child’s Open Heart Surgery

While I knew that we would have to face the surgery one day, it was scary to find that that day was closely approaching. The good thing was that we had gotten Garin to age 14 and that meant that he could get an adult sized valve. If he had needed surgery earlier, then he would be required to have more as he grew. Post puberty surgery was a great relief.

One of the scary things was that there was so much for us, as parents, to decide. While the insurance company dictated the participating hospital, we had a few choices of pediatric cardiologist surgeons.  Checking reviews and outcomes became of vital importance.  Then, once we talked to the surgeon there were other decisions as  Dr. Suvro Sett was also trained in the Ross Procedure.

See, we knew that Garin would have to have a aortic value replacement surgery, so the question was; what kind of value should he get? While he was old enough for a full sized mechanical valve,  an artificial valve would mean that he had to be on blood thinners, Coumadin, the rest of his life to prevent blood clots form forming on the metal value and causing stokes or embolisms. He could have also had a porcine ( pig) or bovine ( cow) or cadaver ( dead person) valve, but all those valves had a greater chance of eventually breaking down and requiring later surgeries. The Ross procedure would take his own pulmonary valve from the right side of his heart and move it to the harder working aortic position. Then the pulmonary valve would be replaced with the porcine, bovine or cadaver pieces. That would eliminate the need for drug therapy and allow the aortic valve to grow with him. Meanwhile if the replacement valve piece was in a less job position and, if leaky, would not be such a danger.

I was long divorced from his father by this time, but it was something that we “decided” together. That pretty much meant I did the leg work and research and told him what I had found so he could second guess me. I had a really hard time deciding on my child’s future. Do I give him a life on drugs or do I give him a life where he will need further surgery? To complicate the whole thing, the side effects of Coumadin is often increased bruising, a greater risk of bleeding, and sometimes limited physical activities. My child was a very active 14 year old boy who motor crossed, snowboarded, and skateboarded. While I was making sure that he would live with the surgery, there was also the question of quality of that life. He was not going to be happy being a boy who had to stay home and read books all day!

My Life Line: Value Replacement Forum

It was, as expected, the online community that got through this part. I spent my time doing tons of researching and understanding the ins and outs, the pros and cons of the various options. In my travels I found Value Replacement Forum and that was heaven sent!

Not only were there folks who had live through this and were kind enough to share their experiences, but I had a good idea of what to expect and was prepared for the recovery. Most importantly, though, was I could talk to grown ups who had the mechanical valves and ask them what they would want. I could ask them  if and how the blood thinners impacted their lives. And I talked to guys who said; Yeah, I still snowboard, Yes, I still mountain bike. Yeah, I fell and got hurt.

And because of those conversations, I decided that we could take our chances with the drugs and the mechanical valve was the way to go.

Meanwhile, there was talk from his dad about getting a second opinion and the poor kid was put on complete physical restriction until the surgery was done. Mind you this was May and that meant a summer of NOT DOING ANYTHING.  I was aware that due to the increased blood flow turbulence of his heart, Garin’s actual aorta had started to balloon and the chances of an aortic aneurysm increased every day that he did not have surgery.  People really don’t have favorable survival rates if they bust open their aorta’s so it was nerve racking. Finally I just called it and told his father, I was satisfied and wanted to schedule the surgery. The talk of a second opinion was raised again, but I, thankfully, put my foot down. The procedure was scheduled for exactly one week after Garin’s 14th birthday; July 25th.  I remember at his birthday party, Garin showing me how he could LIFT UP HIS FATHER! I freaked out so fast “Put him DOWN!! PUT HIM DOWN ” I had visions of his aorta blowing at his freaking party! It was horrible. I was trying not to scared the child for his life, but it was serious!  The surgery could not happen soon enough after that, though looking forward to it would not be the correct way to describe my feelings.

I was actually quite convinced that something would go wrong and  the only reason it would was because I was his mother. Of course, I didn’t share this fear with many, in fact, I do believe my friend and coworker Meridee was the only one who could grasp it.  It was more the curse of my name, it was also that damning concept of a life where loss is the main theme. The idea that I should have to be tested again. It was that despite being completely healthy, and having a very good chance of no complications, I didn’t have fear of the doctors screwing up or some weird thing happening. I had fear that the my bad luck, his bad luck of having me as a mother, would cause my child to be in danger in the name of fate.

A Worthy Cause; Children’s Miracle Hospital

Now, I should talk about the hospital. We were so lucky to have been sent to the Maria Fareri Children’s Hospital at Westchester Medical Center. While  knowing that your child has a major medical issue and needs a massively invasive surgical procedure is not a picnic, this place made the whole thing as painless as possible for us. I really cannot say enough good things about them.

First off, we were assigned a social worker who basically was like the surgical event planner. She made sure that everything was planned, we were met at the door, lobs were in place, insurance all covered. Like all that other crap that can drive you nuts when all you can do is worry; she did. My job was just to be there for my child. It was amazing.

Then the hospital itself is beautiful, impressive and state of the art. I should know because I lived there that whole week. Yup. I lived there and not sleeping in a nasty vinyl guest chair, but they have a Ronald MacDonald house there on the top floor.  Which means I had my own hotel room right there in the hospital.  I cannot begin to tell you how much easier that made everything. I know Big Macs and pink slime are gross. I know I hate clowns. I know they do not pay their employees enough, but Ronald MacDonald Hoses area most excellent thing when your kid is in the hospital and you are worried out of your mind.

Surgery Day: One of the Longest Days of My Life

So if you haven’t gotten the idea yet; this was major surgery.  We’re talking full on open heart surgery, split open his sternum and chest cavity.  His heart would be cut open and part of it removed, replaced with  basically bionics . We also knew that the enlarged section of his actual aorta would have to be replaced as well. I don’t know if I knew this at the time, but this is called the David procedure.

While the surgeons would be doing all this splicing and dicing to his heart, my child would be on the heart and lung machine. Can I repeat that? My son would not be breathing and his heart would not be beating. That completely freaked me out. And if it wasn’t scary enough, this would be about a 10 to 12 hour surgery, so the length of time that my child would not be breathing and his heart would not be beating was hours. Hours.

Rye stayed home with the still small other kids. Garin’s dad and grandma and extended family waited on surgery day as well. I am forever thankful that my best friend Lauralie cam e up to just hang out with me that day. While our mindless chatter about whatever might have seen flippant and our constant walking around and planning for the next round of snacks and “I have to pee” could have been annoying, it kept me sane.

Especially  for the 5 hours or so that my child was not breathing and his heart was not beating because they were cutting it up!

The Outcome of Open Heart Surgery at Age 14

So despite my fears of him being damn because I was his mother, everything did work out perfectly.

I do recall Dr. Sett coming to me after it was done and saying quite clearly without saying it, that it was a good thing that we did it when we did.  Waiting any longer would have been not a good thing. I did interpret this as “his freaking aorta was about to give way and rupture”. How glad am I that I said no to the second opinion and just made it happen!

I was told that the doctors loved this kind of case as the child was totally healthy otherwise and it was something that they could tangible fix. And they did. A day or two of gross chest tubes, then a few months of a nasty incision that gave us a bit of pain healing. His surgery was on a Monday, we came home on Saturday. He took one nap that day and after that? Not a nap, not a Tylenol. It is actually extremely impressive how this kid basically coasted through this major medical issue.  I can’t speak for him, but in some ways, it seemed like he viewed it all as an incontinence that got in his way when all he wanted to do was skateboard. There was no whining, No poor me. He just moved through it and then it was done.

And luckily, after the first few nasty skateboard spills, we realized that luckily, he doesn’t seem to bleep more easily. And the one time he got kicked in the head during a hardcore show, he had dental work that week so his blood levels were low anyway. This is actually one of the times that all the denial in being a birthmother comes in handy. I don’t usually allow myself to think about how very frightening it all is. After all, there is not much point. I can’t do anything about it; but hope my son stays healthy. Eventually, there might come a time that he requires a new valve, but I am hoping that by then doctors will be able to clone one made from his own cells. In the meantime, I will be eternally grateful that as awful as it was, this could have been much much worse and I do believe that the way we were treated and the hospital we were at  had a great deal to do with it.

And for that reason I fully believe that this is a super cool cause worth supporting.

The official “event” is here on Facebook.  Of course it is a local Hudson Valley thing, but hey, give a share. You never know and one does not have to be local to support the cause.  If you are so inclined to give, you can pledge a donation here http://www.extra-life.org/index.cfm?fuseaction=donorDrive.participant&participantID=50786.