Wednesday, August 1, 2012

Wolff-Parkinson-White Syndrome: 1 year later

Last year a friend of mine warned about not sharing your testimony until your test is over. A few days from now marks the 1 year anniversary of Jaycee's heart ablation that "fixed" her Wolff-Parkinson-White syndrome (WPW). With that test over, here's the story:

It started in January 2011. Jaycee was home sick from school with her daddy. One of my clients wasn't home so I went home to eat lunch. I checked on Jaycee. She looked horrible and was acting strange. She was laying on her bed trying to fall asleep at 11 am. This was not typical! She was really pale. Thinking she was having an asthma issue, I hooked her up to her oxygen saturation machine. Her heart rate was 230. I thought it was broken or not reading right because that number was unbelievable. Jason and I checked her over and determined it was working and things were not good. 

We found ourselves in our local ER. I believe every doctor that worked there was in our room. I realized that it was suddenly very serious when they brought the crash cart in. Because Jaycee doesn't speak, I had no idea how long she had been in the fast heart rate they called a tachycardia. Phone calls to St Louis Children's hospital were made. A helicopter was in route. Medicine was given to stop the tachycardia. The first dose did nothing. The people in the room looked nervous. I thought "God is this how it's going to end." I was in shock. The bad part is that I sent my husband home to pack our suitcase. When he left, we didn't know it was that bad. We just wanted to be ready when the helicopter got there.

Another dose of medicine was given. Her heart rate immediately dropped too low and I remember the groans from everyone as we stared at the numbers. But as fast as it dropped, it came back up to 180. This was fast but acceptable. The crisis was over. I sat in a chair and did everything I could to keep my lunch in my stomach.

The next day at Children's we were told this was a rare, isolated event that probably would never happen again. We were confused but glad to hear that it was just a once in a lifetime thing.

A few weeks later, we saw her regular cardiologist though. After reviewing all the tests, he told us the alarming news that Jaycee had WPW. She had an extra electrical pathway in her heart. When it fired, her heart would do the same thing. It may be 2 weeks or 10 years before it fired again but it would happen. Her age of onset and tachycardia was unique. But the bombshell was that there is a risk of sudden death with WPW.

We have gotten a lot of bad news with Jaycee over the years but that was shocking. I cried and cried some more. Fear tried to creep in. I understood that the possibility of her dieing from it was small but it was still there. Every time I left her, there was that nagging thought that started with "What if...." It was a challenging time. If I would have listened to my fears, I would have quit my job and stayed with her 24 hours a day. I tried my hardest to stay positive and not worry. But I knew it was affecting me. I could tell it the most at work. I would be in a session and find myself struggling to keep my mind focused on what I was doing. I felt like a crummy therapist then.

Four months with this diagnosis felt like an eternity. We arrived at the hospital for her heart ablation that would "fix" her WPW. The doctors did their jobs. They were confident they got it and she was fine now. There is a small percentage of kids whose WPW heals itself and comes back. If we made it a year, we were good forever. I felt so relieved to have it over. I was relaxed for the first time in months. I figured she was fine.

A month after the ablation, we saw the cardiologist for her follow up testing. When he walked in our room and shut the door, we knew the cardiologist had bad news. Sure enough, she was in the small percentage of kids whose WPW came back. We had to wait a few months before doing another ablation. The waiting and wondering would have to continue.

August couldn't come fast enough. The ablation was repeated. The electrical cardiologist assured us that this time it was over. I was relieved again. The tension that had built for about 7 months was finally over. I can't fully describe how WPW affected our lives during that time. We tried to avoid sick people to keep her healthy for her ablations. We tried to avoid things that would increase her heart rate like carnival rides. That meant we didn't go to our usual state and county fairs. The emotional toll on me was indescribable. There was constantly a battle between having faith that things would be ok and being fearful of something that might happen.

It's been a year later; I can say that 2011 was the most difficult year we have had with Jaycee. (There were other things beside the WPW.) But we made it. It's one of those situations you find yourself in when you must rely on God to get through the minutes and days. So, here's to Jaycee's heart health for a year!

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