Days of Infamy

First, if you have received the e-mail about this post and or are reading it online I’ve done everything right and moved the blog to the new host. It will be much faster, reliable and expandable to do more things.

I will continue to post every few days or as the spirit moves me. I’ve been extremely busy with the move of the website and been feeling extremely cruddy because of a sinus infection that just amplifies my normal daily yucky feeling. So much to do and so little energy.

The first new part of the blog is the Photo Gallery (it’s link is above in the menu bar). I will start loading some more of the photo’s and videos I’ve received over the past weeks into it. There is a lot of work in pixelating photos that have people not in my family and it’s harder than I thought looking through all of those photos.

I have also published about 15 missing entries that were on Facebook but not the blog that chronicled Faith’s days in the hospital. You may have noticed the gap back there between March and April.

I’m also looking at a way of creating a permanent “mirror” of the Facebook group that started all this so it can be viewed by non Facebook members etc. I need to resolve some technical issues and also de-identify all of the entries made by FB friends so as to not betray their privacy.

The “theme” for this site is called Bouquet, I think it’s more “pretty” and fit’s Faith’s personality better. Ironically I picked it for the colors and layout and then noticed that the banner above had three options for the flower types Tiger Lily, Forget-Me-Not and Pink Dogwood (the default). Ironically in a few days a pink dogwood will be planted in front of our home. It was a remembrance gift from Faith’s Aunt & Cousins in California.

Back to the title of the blog “Days of Infamy”. There have been many in our lives starting with our wedding December 7, 1991. Yes the 50th anniversary of the original “Day of Infamy”, we didn’t plan it that way just happened. Our wedding was anything but infamous, it was a very good day and all went very well, you see the pun though.

As I was getting ready to move the blog over tonight/this morning I was updating some of the old blog entries that had not yet been published and noticed the date June 7, 2012 some significant world events happened on this day in the past. Our most significant was when our first-born child, Jonathan, who at 10 months of age had his first heart surgery on June 7, 1995. That day started out with the normal anxiety any parent would feel having to place their young child into the care of a surgeon who was about to open them up and repair a broken heart. Later in the day many hours after the surgery should have been completed a team of doctors brought us into the infamous “Green Room” at what was then Columbia Presbyterian Medical Center Babies & Children’s Hospital now known as CHONY. They informed us that although the surgery went very well and Dr. Q. was able to perform the fixes he needed to there was a problem. For any open heart procedure you need to be placed on bypass, a machine that will take over for your heart. They cannot obviously work on a heart that is both beating and circulating blood at the same time its doing it’s job. The problem they told us was that when they were trying to remove Jonathan from bypass he would immediately go into heart failure. It was not that his heart was not beating but rather when it became time for it to perform the job of pumping blood on its own it could not and they did not know why. We were then told that he had at best a 25% chance of surviving.

We had the choice of two hospitals in NYC that could have performed the surgery back in 1995, one was Cornell Medical Center and the other Columbia. We chose Columbia because of the relationship we had with Jon’s cardiologist even though we had strong reservations, Sue had previously worked on their cardiac floor with mixed experiences. We were led to Columbia though and that was our final decision. The team offered us a short-term fix to get Jonathan through the next few days, it was called ECMO, another kind of bypass originally used in neonates but something they were willing to try. Columbia had two ECMO machines, Cornell had none. One small problem, both ECMO machines were currently in use. The solution was to piece together a third and enlist many perfusionists (the folks who run bypass machines) to sign up for overtime to work the machine 24 hours a day. They now have a whole team dedicated to ECMO with 15 machines available and many times in use at CHONY. We were told that this was a temporary fix and if they could not fix the underlying problem in 7 days they would not be able to continue and he would die. It wasn’t because of staffing or cost but simply because the data at the time showed that any time past 7 days on ECMO significantly reduced the probability of “positive patient outcome”. The next week is fondly remembered as “hell week” with so many ups and downs. It finally ended with what we sometimes call Jon’s re-birth date of June 14, 1995, the day he was able to come off of ECMO and his chances for survival were greatly improved. He had the title of “sickest child in the hospital” for too long and we were more than happy to give that title back. Sixty (60) odd days later we were done with hospitalizations, surgeries, etc and back home with our child. If you have ever heard us refer to Faith as the “easy one” this is why. Although she was born with Down’s Syndrome she had absolutely no heart defects so we thought our life with her was going to be a walk in the park compared.

Ever since the events of “hell week” Sue and I both either consciously or sub-consciously become anxious on the subsequent anniversaries of those dates. For many years we would ensure that we were away from home on some time of mini vacation (before the kids were in school) to make sure we were distracted. It’s only been 17 days since Faith passed and now another anniversary. I don’t know if her’s will eventually overshadow the events in Jon’s early life. I can only hope. I don’t look forward to “Hell Month” (May 20 – June 14). Only time will tell.

To better days…

5 thoughts on “Days of Infamy

  1. Thanks Joe for the insight to your family. I also wanted to say I love the photo with one of Faith’s favorite shirts, Mad about Dad. 🙂

  2. I remember June 14, 1995, The day my Jeremy was born, but the heartache of worrying if Jonathan would be alright.

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