Have you ever had your heart broken, all your hopes crushed, then found one ray of light that you can hold on to? I can tell you that you hold on tight. You grasp it with ever ounce of strength and pour all of your dreams into it. That is where we were on Wednesday morning. We had funneled all of our energy into the idea that the surgery would save Chaseton’s life. We walked in to the hospital with confidence, knowing that this was a major operation and there were risks involved. Sure in our belief that it would lead to a positive happy ending to our nightmare. They only allow 2 visitors at a time into the CICU so naturally Sammy and Brandon were first. They were gone a long time but that did not worry us, the four grandparents waiting in the hall. We knew that every thing was good. We knew that every thing was going to work out.  About 50 minutes later Sammy and Brandon emerged from the CICU with 2 other ladies I had not yet met. They introduced themselves as Jenny (yes I have changed her name) Sammy and Brandon’s social worker assigned by the hospital to work with them and her assistant Kelly. Jenny said they had some news and that we needed a private place to talk. One look on the face of Brandon and Sammy was all it took to convince everyone that we would not like the talk. Once we found a private room to sit in, Jenny  started off by taking way to much time explaining who she was, what her job was, plus many other details that we just did not care about at that time. I was doing my best not to jump up and yell ” I DON’T GIVE A DAMN, JUST TELL US THE NEWS!!!! Later talking to the rest of the circus they felt the same way. We all knew that they were about to drop a bomb on us. How everybody kept their cool I do not know. Just so you don’t think I’m busting on Jenny she was doing her job and was trying to ease into the news. For this group it was not the right approach. So when she did get around to giving us the news as expected it was not good.

The lead cardiac surgeon had taken a look at Chase’s last echocardiogram and determined that he had a previously undiagnosed pulmonary stenosis. Umm can you speak English please? A pulmonary stenosis is a narrowing or blockage of the pulmonary artery. There are times when this can be fixed during the surgery that they were planning for Chase. In his case the narrowing of the artery was below the pulmonary valve in his heart. The lead surgeon determined that Chase was not an acceptable candidate for the surgery.  This information was given to Sammy and Brandon in the CICU by the lead surgeon. (we later heard him referred to as” Dr. Gloom”) He presented the data in a worse case scenario. The shock of the initial news mixed with “Dr Glooms” dire warnings lead Sammy and Brandon to the conclusion that if all was not lost it was very close to it. To say the least they were once again crushed. Between Sammy, Brandon, and Jenny they tried to fill us in. Jenny had the most technical knowledge but not all the facts, Sammy and Brandon had the doctors briefing but the shock of the news had wiped most of the information from there memory. What they did remember was shaded with gloom.

At this point all we knew was that they could not operate on Chaseton. They were going to try and stabilize him and send him home for the next few months. Later on he would have to undergo surgery, and that he probably faced a life time of follow up operations.

This news came some time around 11 am. As a group we requested a meeting with the surgeon so that we could better understand the situation and get all of our many questions answered. It was a long miserable day of worry. We spent our time visiting Chase and trying to figure out how we were going to deal with the changes.  After 5 pm we got the word that one of the doctors was going to talk to us. He was not the surgeon we wanted but one of the doctors working on his fellowship that we had talked to before. I don’t remember his last name so I will call him Dr. Dave. Dr Dave did a really good job of explaining the options we had in front of us. He was not rushed and was willing to sit and answer every question we had. After further research, I have concluded, that he did paint a rosy picture and he did allude to that himself. It did help to counteract Dr. Gloom.

We left the meeting felling better. We were better informed and had a good idea what the future would bring. Dr. Dave my have slightly overstated the positives but I do not fault him for it. That was what was needed at the time.

I have a complete explanation of Chaseton’s heart defect and the options we have for the future. I will post that next.

But first here is my FB post for Wednesday.

As the old saying goes one step forward two steps back. We had a bit of a setback today when we learned that Chase cannot have the operation that they were expecting to fix his heart.  A problem with one of the valves in his heart makes this solution likely to fail. There are two other procedures that are capable of solving his problem. Neither of these solutions can be performed until Chase is older. The hospital is going to spend the next two weeks or so trying to ensure that Chase is stable enough to move back home. Sometime in the next year, probably around the eight-month mark, Chase will come back to Atlanta to have one of these two operations performed. If everything goes as we hope this should allow Chase to lead a long happy normal life.