Graham Timothy (2007)

Graham at 8 months (prior to G tube)

Graham Timothy was born on March 8, 2003 with a couple of major heart defects that went undetected throughout the pregnancy. He was born with critical aortic stenosis, aortic insufficiency and a left ventricle that was not pumping. He was air lifted from Troy Beaumont to the University of Michigan in Ann Arbor just hours after birth. The doctors were unsure that he would make it through the night. He surprised them and did. After talking with several doctors, specialists and the surgeon his parents were told the only viable option for Graham was to have a heart transplant.

Graham was put on the heart transplant waiting list when just a few days old. We were told Graham did not have a long time to wait and that his heart was so deformed, he probably wouldn't make it past a couple of weeks. Well, after five weeks went by, the call everyone had been longing for had finally come. On April 18, 2003 Graham received the gift of life and had a heart transplant at 6 weeks old. The donor heart also had an ASD which was repaired after being transplanted into Graham.

The recovery was long and Graham remained in the hospital for 10 weeks after the transplant. It was during that time that yet another defect was noticed. It was a coarctation of the aorta, which is a narrowing in the aorta. In Graham's case it narrowed where the donor heart and part of his original aorta were sewn together. This was ballooned during the time in the hospital, but this was only a short term fix.

After a few setbacks, in October of 2003 he had this defect surgically repaired. When he was first sent home at 3-1/2 months old, his daily regimen consisted of 10 medications, each taken from one to four times a day. He was soon also diagnosed with asthma and anemia, which we had to give him shots of Procrit for months at a time.

In January 2004 he had a G tube placed and a Nissen Fundoplication done to help with his severe reflux. In March 2004 he had to have the Fundoplication redone because it had come 'loose' and he was once again vomiting constantly.

In April 2004, Graham was also diagnosed with yet another birth defect—Sagittal Craniosynostosis. One of his skull sutures had closed too early and there wasn't enough room for his brain to grow, so in September 2004 (3 weeks after his baby sister was born) he had a cranial vault repair where they "broke" his skull into 90+ pieces to reshape his skull and make room for his brain to grow.

Graham has suffered from chronic diarrhea, having up to 15 dirty diapers a day. He has had this since the transplant and we have been to 4 major hospitals, in 3 different states, he had several tests/biopsies done and tried several medications, but no one has been able to come up with an answer for us.

He was 100% G-tube fed and suddenly lost 10 pounds in the matter of 3 months because of the diarrhea. In May 2006, his doctors admitted him for a broviac line (central line) to be placed into his chest, to provide TPN (Total Parenternal Nutrition). This would provide nutrition into his blood stream and help him to gain the weight back, because any nutrition in his stomach caused too much diarrhea and weight loss.

We spent the majority of the summer of 2006 in patient at the University of Michigan for several blood infections caused by the broviac line. We were in and out 4 times. Two of the times he was sent home on IV antibiotics. The fourth time he was admitted for some unknown virus that caused massive internal GI bleeding.

Graham was losing too much blood and his body was not able to clot it off. He was losing blood faster than they could transfuse it into him. He was also getting plasma and other clotting factors, but they were not helping. He had some tests done to try to find out where they bleeding was coming from, but there were no answers. He was in ICU and we were being told if he didn't start to clot of the bleeding, he would not make it. Through the grace of God and the numerous prayers being said for him, his body miraculously started to clot off the bleeding and it slowed down tremendously. He was still receiving numerous transfusions to catch up on the blood loss, but he was "waking" up and sitting up finally.

At our request and the transplant team's suggestion the broviac line was removed and a PICC line placed, which was removed shortly after that. Graham had gained the weight back and was back to 100% G-tube feedings. He was able to maintain his weight even with the diarrhea.

Our family also relocated out of state the fall of 2006 and had to get set up with new doctors, specialists and therapists. He had a wonderful speech therapist that worked a lot on his oral motor skills. Ever since February of 2007 he went from 100% G-tube fed, to 100% ORAL eating!!!! Just before his 4th birthday he began eating real food. It was a slow process. Starting out, it would take him 30 minutes to eat one chicken nugget. Now he'll eat 5 nuggets in 15 minutes! His progress has amazed us and we are so grateful to see him eating with us at the dinner table. He still needs to work on different textures, like applesauce, yogurt, and corn, but he loves nuggets, strawberries, grapes, and carrots. And with this oral eating his diarrhea has significantly decreased to only about 3 times a day.

His "heart birthday" is coming up on April 18 and we truly celebrate this day and remember his donor family, as we do everyday. We know that without them, Graham would not be here today.

We praise God for this little miracle!