New Heart Diagnosis...

Well, this is a post I never thought I would have to write. It is a long post, so please bear with me as I try to include all the relevant information. It seems that Caden has some heart defects which have always been there but no one has seen until recently. Let me back up and I will tell you the whole story through today.

Since we moved to Washington, we had to establish the kids with new cardiologists. The closest pediatric cardiologists are in Spokane, three hours away from Walla Walla. However, we are lucky, because they come to WW about once/month to see patients there. For us that works out perfectly since both the kids have been doing great and shouldn't need a lot of monitoring. They had their first appointments with Dr. Burg in WW in April. She examined both boys and we went over their medical history. Caden's took longer since he has been through more in terms of surgeries, complications, etc.

Dr. Burg wanted to do echos on both kids but decided she would like to do them at her office in Spokane in August since we were going to be there for other appointments for Caden anyway. And, she wanted to get a copy of the only heart catheterization Caden has ever had from UC Davis in Sacramento just to have it for review and future comparison. I completed the medical release forms for that to happen.

In August, the kids had their echos in Spokane and for some reason, they weren't scheduled to see the cardiologist on the same day. So, we scheduled to see them in Kennewick (which is an hour away from WW) the following week. At that appointment we met with Dr. Garabedian who is the senior cardiologist in the group. During that visit, he told us Caden had a small ASD (atrial septal defect). (I wrote about this in a previous blog if you want to go back and read it.) But he really believed it was very minor and nothing to be concerned about right now. He said they would check back in a year and see how things were going.

So, imagine my surprise when I get a phone call while Greg and I are in Monterey in October, from the cardiology office wanting to schedule a heart catheterization. It was a scheduler and I asked her why they wanted to do a cath. This was the first I had heard about it and I had no idea anyone was even considering this. The last I knew we would see them again in August 2013 and talk about things then. The scheduler was really apologetic because I hadn't heard from a cardiologist yet. She told me she would have a nurse practitioner call me and update me on what was going on. Well, it ended up being several hours later when I finally got a call back, but it was Dr. Burg who called and not an NP, which I was grateful for.

Dr. Burg also apologized for not calling me sooner, and especially not calling before the scheduler got ahold of me. She said she had been out of the office sick for several days and that had caused her to not call me when she planned to. She told me she had finally gotten a copy of Caden's cath in September from UC Davis. I'm really not sure why it took them from April all the way until September for them to send that to Spokane. But there is nothing I could do about that. Dr. Burg said she compared the cath from July 2009 to the echo they did in August this year and she didn't like what she saw. She said she had some concerns about things that didn't look quite right. First of all, she said she didn't think the ASD was small. She thought it looked pretty big. And she said the right side of his heart was enlarged, and it looked like there was a possibility of the pulmonary vein going to the wrong place based on coloration (oxygenated vs. non-oxygenated blood) they were seeing on the echo.

Talk about feeling like I got punched in the gut! I could hardly believe what she was telling me. She went on to say she felt a cath was necessary to further diagnose and identify the problems so we knew what we were dealing with. That being said, she didn't feel it was time-critical because he was doing well. So she gave me the option of waiting until springtime to do it. I told her I definitely wanted to wait. That way it would give me time to process this new and overwhelming information. Because if they were correct, it meant that Caden would have to endure open heart surgery to repair things. And he's never had open heart surgery. They were in his chest but they never had to open his heart. They repaired his aorta and his diaphragm.

I couldn't help but cry when hearing this news because I thought everything was behind us in terms of surgeries. I was completely stunned with this new and devastating information. A couple days, I decided I wanted to get another opinion, or two... First I contacted a pediatric cardiac surgeon who is in Sacramento; Dr. Teimour Nasirov. He was finishing his fellowship at Stanford while we were there in 2009 and when he was done, he was hired by Sutter Memorial Hospital in Sacramento. He was very involved in Mended Little Hearts, the heart support group we belonged to there, and we had become friends over the years.

I told him what I had just found out and asked him if he thought it was possible. He said he had a hard time believing that Stanford, UC Davis, and Dr. Van Gundy (the kid's cardiologist in Sacramento) would all have missed this. But he said he has learned to never say never when it comes to heart defects. So he wanted me to have the cardiology office in Spokane send him a copy of the echo for him to review and then we could go from there. I called their office the next day and asked them to send it.

Then I decided I needed to talk to Dr. Van Gundy and see if he could go back and look at Caden's echos from his office and see if he could find anything that made him agree or disagree with Dr. Burg. I left him a voicemail and he called me back a few days later. I told him what was going on and he said he would definitely go back and review the imaging and he would get back to me. A week later, he called me and told me he agreed with Dr. Burg and he felt Caden had “Sinus Venosus ASD.” This is a specific kind of ASD. He said he didn't feel a cath would be necessary and that he would probably just need to go in for surgery. Hearing this news, I was crushed. I was holding out hope that he would say Dr. Burg was wrong and everything was fine. But with his consensus I resigned myself to the fact that Caden needed surgery. Greg on the other hand was adamant Caden was fine and would not need surgery.

I was still waiting to hear from Teimour about the echo we had sent to him. But week after week went by and no echo arrived. I had Dr. Burg's office send it more than once and he never got it. At this point, it was almost the week of Thanksgiving and I was going to be in Spokane. Caden had a few doctor appointments that week so I went to their office and had them burn me a disc with his echo while I waited for it so I could make sure Teimour got it. I was flying down to Sacramento on November 27 to go meet baby Olivia, so I told Teimour I would hand-deliver the disc to his office as soon as I could get there from the airport.

On November 27, I flew to Sacramento, got my rental car, and drove directly to Teimour's office. He was there and I handed him the disc with Caden's echo. We talked for awhile and I told him that if Caden had to have surgery I wanted to do it at Sutter with him and Dr. Reddy. Dr. Reddy is the surgeon who did Caden's surgery at Stanford. He comes to Sutter once/week to do surgeries with Teimour. This way we could have the same surgeon who did Caden's first surgery, we could have Teimour who we know and trust, and we could be in Sacramento where we have a support network and places to stay while we are there. Teimour wouldn't even talk to me about any of that though until he reviewed the echo. He said he was taking it to Stanford with him the next day, November 28, and was going to present Caden's case at their weekly cath conference to see what the team there thought about it. He said he would call me the next evening to let me know what was decided.

I received a call from Teimour on the 28^th telling me Dr. Reddy agreed it looked like Sinus Venosus ASD but there was concern about the pulmonary veins and the potential for “partial anomalous venous return” and they wanted more imaging done.

The question now was where do we do the imaging? And what is necessary? Do we need to do a cath? Or can we do an MRI and get all the information necessary? Obviously I want to go with the least invasive option possible and that would be the MRI. They both require sedation, but the MRI is non-invasive which means fewer risks and that sounds a lot better to me! But I have to wait to find out what the doctors recommend.

On December 4, the decision was made by Dr. Reddy and Teimour to do an echo at Stanford on December 19. Greg and I are going to be in California for a few days for Christmas and this gave us the opportunity to do this echo. They said once they did the echo they would decide whether or not they needed more imaging or if they were happy with what they got. If they want more imaging they would squeeze Caden in on the 21^st at Stanford for an MRI or cath in order to take full advantage of the time we are in California.

So that is where things stand currently. We have tickets to fly down to Oakland and stay with Greg's sister in Concord for a week. While we are there, we will take Caden to Stanford for an echo on the 19^th and go from there. Please keep us in your prayers! We just want some definitive answers so we can move forward one way or another.