The long(ish) answer...

[rebby]

I've been asked a number of times about why my restoration stalled, where I disappeared to, etc and I just keep giving people a brief summary and moving on. In the beginning the answer was simple, I got really sick, then we were trying to sell our house and buy a new one, new baby, etc, etc However, my last 19-months or so have been pretty complex so I figured that I'd start a new thread w/"the long answer" that I could simply point to instead.

Blake, my 2 year-old son, has 4 heart conditions. 3 congenital defects and another issue called Pulmonary Stenosis (which is a "side affect" of his defects). His 3 defects include; Pulmonary Atresia (he was born without a pulmonary artery/valve off his heart), Ventral Septal Defect (VSD - hole between the 2 ventricles in his heart), and Major Aortopulmonary Collateral Arteries (MAPCA's, basically his lungs are connected to his aorta rather his, largely nonexistent, pulmonary channel). The Pulmonary Stenosis is a by product of the defects. Stenosis is nothing more than a fancy way of saying "very narrow" thus, his pulmonary arteries are super narrow, mainly due to the fact that he went nearly a year (51 weeks) with no pulmonary blood flow whatsoever but also due to the fact that his pulmonary arteries are really more like a bronchial artery. For that reason, he'll need constant interventions to encourage growth of these arteries.

Last year Blake ended up having 3 open-heart surgeries to get his heart working a little more conventionally (and a number of a catherizations, both Angiograms and Angioplasty). During his first surgery his MAPCA's were either tied off or moved to his pulmonary system (some of them were small/redundant so they could safely be eliminated). Next they installed a valved homograph to serve as a pulmonary artery. About 3 months after this surgery Blake had an Angioplasty procedure (they insert a line through your femoral artery into and through your heart and strategically expand balloons to expand your arteries) performed to help expand his new pulmonary system and drop his right blood pressure. This Angioplasty didn't go well and Blake ended up experiencing the 1 in a 10,000,000 side affect of Angioplasty, a dissection and resulting aneurysm of his left pulmonary artery. After about a week in the ICU to monitor the aneurysm, we were able to go home.

A few months later we went back for surgery number two. This surgery was to repair the aneurysm and expand the LPA (left pulmonary artery) via a bovine patch (they slice the artery laterally and stitch in a patch to increase the over all circumference). During this procedure Blake developed a major bleed in his left lung and nearly bled out. His surgeon was able to keep things under control however and Blake came out of the surgery after a few hours of monitoring and was transported back to the Cardiac ICU. In addition to fixing the aneurysm, Blake also had another aneurysm repaired, received a new heart valve (he outgrew the one he received earlier) and had a stent placed to help stabilize his LPA (stents in a kid are bad, like his heart valve, he'll outgrow it and need to have it upgraded surgically for many years to come). Because of the complications he was moved to ICU with an open chest. He was literally propped open like a deer with a piece of surgical steel and clear "sticker" was placed over his "wound". We could see his heart beat, his lungs fill/empty and monitor the bleeding this way. It was the most surreal thing that I've experienced. A few days later he was transported back to the OR for some basic clean up and chest closure. Technically this was surgery number 3. Very low key but they did physically remove his heart from his chest for a short time so, as far as I'm concerned, this was a full out heart surgery. Although, unlike his other two, it was not a bypass procedure.

In February of this year Blake returned for another Angioplasty to work on his troublesome LPA. This ended up being a total failure however and no balloons were ever deployed. Because further intervention will require an extensive 5+ day hybrid surgery/catherization procedure, it was decided that we would leave him be until his body tells us that it's time to go back to the OR. In the meantime, we're simply monitoring him. His oxygen saturation is a key metric as is his heart rate. His oxygen sats are still quite high (he hit 90% on room air!) and his heart rate is right where it should be (132 at the last check). For a kid who, only 19 months ago, had a sat of 72% and a heart rate of 157, this is a very good sign. We return to the Mayo Clinic tomorrow to help plan for his next steps.

If you're interested in the full story (and have a TON of time to kill), there is a lot of information on Blake's Caring Bridge page.

As for the status of my Charger... Well, it's somewhat on hold. I started working on little things again as time has allowed and am targeting this winter for paint. A lot of that really hinges on tomorrow though. I still don't have it fully prepped for paint and I have yet to find a body shop willing to give me a solid quote (you know how they can be). At this point I'm still thrilled that I've been able to keep the Charger and keep plugging along as time has allowed.

So, anyway, that's my past few years in a nutshell. It's been one heck of a ride and doesn't appear to be slowing down anytime soon!

Oh, here is a pic of Blake enjoying the Charger from a few weeks ago. Looking at him, you'd never guess what was going on inside.

[BigBlackDodge]

Family first!

Nothing else matters really.


Blake looks like, and from what said about him, is tough kid!


Hope all goes well with the little guy!



BBD

[69rtse4spd]

Family first!

Nothing else matters really.


Blake looks like, and from what said about him, is tough kid!


Hope all goes well with the little guy!



BBD

I agree. .

[Indygenerallee]

I hate to hear that, He looks like a happy little boy and family is all that matters in life and it's sad that alot of folks put other things in front of family, Keep your head up and I will be praying for your situation and son! Good luck on the Charger!! 

[skip68]

To me, the worst thing in this world is a parent watching their young child fight for their life.   I couldn't imagine the heartache you and your wife have and are going through.  
You do what you can when you can with the car.  You just keep hanging in there.    

[JB400]

Sad to hear, but unfortunately, those things happen.  But, I'm going to be optimistic, he's going to get to enjoy a cool car when they both get off the operating table.

[JB400]

Any updates on the little hard charger?

[rebby]

Any updates on the little hard charger?

Our last appointment at Mayo (in September) went very well. His ECG looked good; overall heart function was good, minimal valve regurgitation, VSD had minimal right to left flow, etc. In addition to his ECG being so positive his O2 stats where high as well, 92% (that's the highest he's ever been), and his pulse hovered right around 130. All in all a very positive visit.

We'll return to Mayo in early January for another ECG. At this point Blake has avoided the OR for over a year (MAJOR accomplishment) so I'm not sure how much longer we'll be able to avoid going back to surgery. I guess only time will tell.

Our challenge at the moment is working with Blake on talking. Since he spent so much time in and out of surgery last year he really took a hit on some of his developmental areas. At the moment the only area that he's struggling with is talking. He's always been a quiet child which isn't helping much. We have an appointment scheduled on Monday to see if we can't help him along a bit in this area. I'm sure that once we get him started talking we won't be able to get him to shut up, just like his older siblings.

Here is something that some of you will enjoy... stroker400 for sure. Blake has taken to the Duke's of Hazzard, big time! Anytime that I'm working from home he'll come into my office, get my attention, and start begging for "pop pop" (popcorn). Sometimes he'll even get the popcorn out of the kitchen, carry it into the office, and try to drag me back into the kitchen. Anyway, anytime that I have popcorn with the kids we always turn on the Duke's of Hazzard so, in a way, popcorn and the Duke's are one in the same. If I agree to make popcorn for Blake he goes right for the DVD player and loads up a random DoH DVD. It's gotten to the point that he's even started to queue up DoH on his own, even if we're not having popcorn. At some point DoH just might kick out his daily episode of Bob the Builder! He's even claimed one of my die-cast Generals as his own and will "drive" it all over the house. It even comes to bed with him quite a bit!

Since getting the second 69 and deciding to build it into a GL, my older two kids have become General Lee nuts as well. My 6 year-old has even brought 3 different die-cast Chargers (one GL) to school for show and tell and fully intends on bringing the rest of them at some point as well (we must have 10-15 of them scattered around the house). Blake even understands that the red car in the garage is "da-da's General Lee". It's really cute, if he's playing with his GL and you ask him where dad's is, he'll take you by the hand and bring you to the garage. I've got my work cut out for me... Anybody have some extra orange paint?

[JB400]

Glad to hear   Seems the General provides a lot of encouragement to a lot of people.

[Mike DC]

     
Tough situation.  It hurts to see anyone's kids have to go through stuff like this, let alone your own. 

It also does a heck of a job of putting your priorities into shape.  So much bullshit that does not matter gets washed out of your mind when a family member is in trouble.



I hope for the best.  He looks happy as heck in that car. 

 

[rebby]

It also does a heck of a job of putting your priorities into shape.  So much bullshit that does not matter gets washed out of your mind when a family member is in trouble.

Couldn't have said it better myself. When you have something like this going on in your life, it becomes increasing easier to let the little things slide. A lot of the bullshit in life simply does not matter.

I hope for the best.  He looks happy as heck in that car. 

He's a trooper alright and he really enjoys life to the fullest. I have yet to see anybody embrace the concept of "carpe diem" quite like Blake does.

Here is another pic from early November 2011. This was taken about 1 week after Blake's 3rd open heart surgery. He was trying to kick back and relax while watching "Cars" and dad was bothering him with the camera. He was pretty sick here too, he developed a nasty infection after surgery that knocked him down pretty hard for about 2 months. Poor little guy.

[b5blue]

  We are all here for ya Curt! My car sat dead ended for many years while I raised my 3 with minimal help from their mom. ("The EX.") The Charger project became a rallying point for the 4 of us as a family. Even with no or very little progress through those years it was a point of interest and determination that we keep Ol' Blue. I thank the Good Lord every day for my kids continued good health so my heart goes out to you and your little Rebby!   

[Charger-Bodie]

Family is the top priority for you as it should be.  The Charger will wait. Cute little man you got there.

[Fred]

     
Tough situation.  It hurts to see anyone's kids have to go through stuff like this, let alone your own. 

It also does a heck of a job of putting your priorities into shape.  So much bullshit that does not matter gets washed out of your mind when a family member is in trouble.



I hope for the best.  He looks happy as heck in that car. 

 

My sentiments exactly,  all the best.