Open Heart Surgery – The Fontan Procedure

Verse of the Day

Isaiah 40:31
Yet those who wait for the Lord
Will gain new strength;
They will mount up with wings like eagles,
They will run and not get tired,
They will walk and not become weary.

My story begins at birth. Due to the fact that I was born with my heart defect in 1978 there wasn’t a whole lot of options back then other than wait and see what happens. I had blue lips, fingers, and toes and I was underweight all my life. I was sick, but I felt ok. Normal for me, though, I couldn’t play as much as my friends because I would get tired easily and that frustrated me but for the most part I had a great childhood. Well, minus all the heart caths and checkups that is. I started to get really sick around 10 and 11 years old. My energy level was decreasing and my heart size was increasing. So in 1991 the doctors told my parents that I need to have heart surgery to live. It was that simple. The Fontan procedure wasn’t being done in Houston at the time and the best place to have it done was The Mayo Clinic in Rochester, MN. So that’s where we went. I went up in 1991 for a review, checkup, and meet and greet with the doctors. The next summer on June 26, 1992 I had my very first open heart surgery.

The hospital at the time showed a poorly made video of what to expect before and after surgery. It didn’t look that scary… but when I woke up in ICU and I had a million tubes coming out of everywhere and I had a vent in my throat so I couldn’t talk, I was scared to death! When I woke up I remember my daddy holding my hands saying, ” baby, your pink! You fingers and your lips are so pink!” I couldn’t see because my arms we strapped beside me, but I heard the joy in his voice and that was good enough for me! It was rough though. I was in ICU for 3 or 4 days. And let me tell you I was pissed at the doctor. I wrote on a piece of paper for him to kiss my butt because he wouldn’t let me have any ice chips to suck on. My throat hurt I was parched with thirst. I lost a lot of blood in surgery too, so they were monitoring me very closely. The hardest part was after ICU. I do remember a little… walking the halls with my chest tubes still in… that was no fun. I couldn’t bathe or wash my hair and I was in a really bad mood. At 12 years old I was totally confused about what was happening to me. I do know that the day I got my chest tubes out was horrible. It takes about 3 seconds for each chest tube and let me just say, that was the longest and most painful 6 seconds of my young life.

Once the tubes came out I got to shower. That was fantastic! I hated having dirty hair (still do)! The next day was the fourth of July and one of the doctors let us use his car and go out and watch some Fireworks! That was the most fun I had had in a while and I was so happy! My mom was happy to… Finally a smile on my face and freedom from my cranky pants! We finally flew home a day or two later. I was so happy to be going home! I missed my dad and my brother. I always wonder how Geoff must have felt during all of this. Poor guy got shipped off to summer camp. I wanted to go with him. He made me laugh… Still does. Silly Goof!

The recovery process at home was hard. I just remember feeling crummy. I cried a lot and didn’t eat much. My mom threaten to take me back to the hospital at one point to get an IV if I wasn’t going to eat. She meant well, she was just really worried. This was her first time going through all this too. I am sure it was heart wrenching for both of my parents to watch all of this unfold.

At the end of the summer I was back in school with no problems on the first day just like everyone else. However, I wasn’t like anyone else. I now had a 13 inch scar down my chest and I was only 2 months post op open heart surgery. Not many kids starting 8th grade can say that. So I took it easy for a few months. I was a whole new person with pink lips and fingers and I could really walk and talk and breath well for the first time in my life. It was a fantastic feeling. I wanted to do everything that I hadn’t been able to do before. I even tried out for the track team. I ended up being the team manager, but I tried and that was more than I was ever allowed or able to do before.

I was in great health for 10+ years after that surgery. I lived as a normal teenager just like all my other friends. It was so Awesome! God really came through for me on that one! And he still does today!