This webpage is all about me - Jared Raymond Turngren. I am ten years old, in fourth grade and have a lot to tell. I like to share my story to give families hope and encouragement when faced with Hypoplastic Left Heart Syndrome (HLHS) or any Congenital Heart Defect (CHD). When you are finished reading my story, I would LOVE it if you would sign my guestbook so I know you were here.
It was January 16, 1999 when I poked my head out into the world. I finally got to meet my family. My big brothers were even there waiting for me. It was so exciting!! We only had a few hours of being excited and then our excitement turned into fear. When my pediatrician (Dr. Parikh) came to examine me, he heard a heart murmur. He didn't like the sound of my heart, so he had me stay in the nursery overnight and had the nurses watch me closely. By morning, I hadn't gotten any better, so Dr. Parikh thought it would be best if I took an ambulance ride to Children's Memorial in Chicago, Illinois. Before getting in the ambulance, I was baptized, had a breathing tube put in and had IVs put in all over my body.
Shortly after arriving at Children's Memorial, my family was told that I have Hypoplastic Left Heart Syndrome. This means that the left side of my heart is underdeveloped and unable to function properly. Without any kind of intervention, I probably wouldn't survive longer than a week. The only other options that would keep me alive would either be a heart transplant or a series of three high risk open heart surgeries over a period of a few years. The doctors felt the surgeries were the best choice for me. I had the first surgery (The Norwood) done by Dr. Mavroudis and Dr. Backer when I was just six days old on January 22, 1999. The next few days were critical, but I made it! Tubes were slowly coming out and I was closer to coming home. After many ups and downs I was able to come home 8 weeks later on March 14. I came home on lots of medicines and with an NG tube. I had to have the NG tube (a tube down my nose that goes into my belly) so I wouldn't use too much energy eating. I had to put on weight and get ready for surgery #2. Instead of eating from a bottle, mom would put my high calorie formula down the tube.
Before I knew it, I was showing signs that surgery #2 (The Bi-directional Glenn) was needed. On June 9, 1999 (at 4 1/2 months old) mommy was handing me back over to the surgeons. This time I knew how much fun it was to be home, so I didn't give the doctors any trouble. I came home on June 20th..only spending 11 days in the hospital. I was still on lots of medicines and the NG tube, but I felt and looked much better! Mom was disappointed that I wanted to keep the NG tube, she was hoping I would want to eat now that I was feeling better. I thought the NG tube was pretty cool - I didn't have to wake up to eat or taste all those yucky medicines. As I got older and started crawling around, the NG tube was getting pulled out daily. I HATED it when mom had to put it back in. Dr. Webb (my cardiologist) thought it would be best to get a G tube (a "button" on my belly) and get rid of the NG tube. Dr. Webb also felt the G tube would help me gain better weight and prepare me for surgery #3 (The Fontan). I had the G tube surgery in April, 2000 and was home the next day.
Over the year, Dr. Webb watched me closely. She had some concern that I wouldn't be able to have the Fontan and would need a transplant. She was worried that the function of my heart and my leaky valve were too bad to undergo the Fontan. When I reached my 30 pound goal for surgery, I had a heart catherization (in July, 2001) to see if my heart and valve were good enough for surgery. The cath showed I could go ahead with surgery #3!! I had the Extra Cardiac Fontan on October 16, 2001 when I was 2 1/2 years old. I recovered pretty quickly, out of the ICU in just one day but remained in the hospital for 5 weeks. I had lots of fluid around my lungs (plueral effusions) and had to wait to get rid of that before going home. I also had a pacemaker put in about a week after surgery to help my heart work a little better. I got home just in time for Thanksgiving...on November 19th.
Since then I've been doing GREAT (except for the fact that I have had a few anaphylactic allergic reactions to foods/vaccinations that contain eggs or gelatin)! I had my G tube removed in September, 2002. I had my pacemaker & lead replaced in June, 2009 (but this time at Riley Childrens Hospital in Indianapolis). Because of complications, I spent two days in the ICU before going to the heart floor. My oxygen saturation (amount of oxygen in my blood) is around 98-100%-just like a "healthy" person. If you look at my photo page (click "Next"), you will see just how healthy I look.
To watch for frequent updates, you can visit my CarePage (www.carepages.com) under JaredTurngren. (Note: there are no spaces in between names).
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