rmchrgr
Skate And Destroy
Just wanted to share this here since I spend enough time on this board and now know a few of you guys well enough. Today is my son Jake's first birthday and it's been an unbelievable first year. He's had more harrowing experiences than most people ever go through in a lifetime and has made it to a huge milestone no worse for the wear. I don't normally bring it up because it's private and I wouldn't want anyone to feel sorry for us, but I feel like it deserves mention since I'm so proud to be Jake's dad.
Here's the story in a nutshell: Jake was born with a congenital heart defect/condition called aortic stenosis evolving into Hypoplastic Left Heart Syndrome.This disease essentially renders the left ventricle useless - the heart is working against an obstruction. Aortic stenosis is basically a malformed, leaky aortic valve at the bottom of the left ventricle which creates high pressure in the ventricle. The result of this is that scar tissue forms, essentially shrinking the ventricle into a tight, inflexible muscle mass. In the past, the only way to cure this would have been a series of thee very high-risk open-heart surgeries that re-route the blood vessels and take the left ventricle out of the equation. Often kids who have take this course (three-chambered hearts) don't do very well and have a compromised quality of life.
Instead, my wife had a procedure done in utero to stop the advancement of HLHS (scarring) and it was a success. Our doctor calls it the 'science fiction' procedure. We were #63 for that. Since then, it's been a little up and down for us. We spent about one third of the last year in the hospital. Over that time he's had 6 cardiac catheterizations. Last August he survived a full cardiac arrest which required 30 minutes of CPR and 5 shocks from the defibrillator. He thankfully did not sustain any neurological, tissue or organ damage. We were told at thast time that he may need a transplant and it would be risky because the backup of pressure in his heart had caused a secondary condition known as pulmonary hypertension. PH is a dangerously high blood pressure in the lungs. We knew we would be headed for open-heart surgery though and one month later he had an experimental procedure done to remove the remaining scar tissue and fix both his aortic and mitral valves. Jake did in fact had some scar tissue around his left ventricle but the chamber was functioning and was the right size. The surgery essentially scraped away the scar tissue to help the heart become more flexible and relax. It worked! He was only the fourth person ever to have this done with his particular condition and was only 6 months old at the time. The surgery really seemed to help him as he's never looked back.
He also had a fairly severe case of reflux that used to make him vomit violently several times a day. It's made a little comeback lately but thankfully is no longer a regular occurrence.
Jake had suffered some developmental delays because of the amount of time he spent in the hospital but despite that, he's pretty close to normal for his age. He's eating better and gaining weight a little faster. He's commando crawling, getting his teeth, babbling, pulling up to standing and cruising. He has a pretty much normal life. He loves his books and toys and can entertain himself for what seems like hours without fussing.
I'd also like to note that Jake might be the happiest baby I've ever encountered, he is always smiling and excited. He is definitely the strongest person I know, infant or otherwise. And I never like to refer to him as sick, just a few damaged parts.
I've been taking care of him and it's been an absolute joy. Someday soon I will get back to my career of fixing cars - we think he's OK enough now to leave him with a a nanny but we're not quite ready yet. We've only left him alone a few times yet. In any event, I'm going to start looking sometime in the next few months.
Thanks for reading, I'm happy to finally share this stuff with the board. FABO has definitely kept me going through some of this stuff, it was an outlet for entertainment which helped to keep my mind of things and pass the time.
Congratulations Jake! I love you more than anything!
- Greg
Here's the story in a nutshell: Jake was born with a congenital heart defect/condition called aortic stenosis evolving into Hypoplastic Left Heart Syndrome.This disease essentially renders the left ventricle useless - the heart is working against an obstruction. Aortic stenosis is basically a malformed, leaky aortic valve at the bottom of the left ventricle which creates high pressure in the ventricle. The result of this is that scar tissue forms, essentially shrinking the ventricle into a tight, inflexible muscle mass. In the past, the only way to cure this would have been a series of thee very high-risk open-heart surgeries that re-route the blood vessels and take the left ventricle out of the equation. Often kids who have take this course (three-chambered hearts) don't do very well and have a compromised quality of life.
Instead, my wife had a procedure done in utero to stop the advancement of HLHS (scarring) and it was a success. Our doctor calls it the 'science fiction' procedure. We were #63 for that. Since then, it's been a little up and down for us. We spent about one third of the last year in the hospital. Over that time he's had 6 cardiac catheterizations. Last August he survived a full cardiac arrest which required 30 minutes of CPR and 5 shocks from the defibrillator. He thankfully did not sustain any neurological, tissue or organ damage. We were told at thast time that he may need a transplant and it would be risky because the backup of pressure in his heart had caused a secondary condition known as pulmonary hypertension. PH is a dangerously high blood pressure in the lungs. We knew we would be headed for open-heart surgery though and one month later he had an experimental procedure done to remove the remaining scar tissue and fix both his aortic and mitral valves. Jake did in fact had some scar tissue around his left ventricle but the chamber was functioning and was the right size. The surgery essentially scraped away the scar tissue to help the heart become more flexible and relax. It worked! He was only the fourth person ever to have this done with his particular condition and was only 6 months old at the time. The surgery really seemed to help him as he's never looked back.
He also had a fairly severe case of reflux that used to make him vomit violently several times a day. It's made a little comeback lately but thankfully is no longer a regular occurrence.
Jake had suffered some developmental delays because of the amount of time he spent in the hospital but despite that, he's pretty close to normal for his age. He's eating better and gaining weight a little faster. He's commando crawling, getting his teeth, babbling, pulling up to standing and cruising. He has a pretty much normal life. He loves his books and toys and can entertain himself for what seems like hours without fussing.
I'd also like to note that Jake might be the happiest baby I've ever encountered, he is always smiling and excited. He is definitely the strongest person I know, infant or otherwise. And I never like to refer to him as sick, just a few damaged parts.
I've been taking care of him and it's been an absolute joy. Someday soon I will get back to my career of fixing cars - we think he's OK enough now to leave him with a a nanny but we're not quite ready yet. We've only left him alone a few times yet. In any event, I'm going to start looking sometime in the next few months.
Thanks for reading, I'm happy to finally share this stuff with the board. FABO has definitely kept me going through some of this stuff, it was an outlet for entertainment which helped to keep my mind of things and pass the time.
Congratulations Jake! I love you more than anything!
- Greg
