Carson had two amazing doctor appointments in December. We went down in early December to see his GI doctor one last time. Dr. Sharp has been in charge of Carson's GI care since November 2001, when we transferred from Children's Hospital to Fairview Children's Hospital to get Carson listed and while we waited for his liver transplant. There are four doctors who we credit with saving Carson's life at various times in his medical journey. They are Dr. Burns (his family doctor who sent us to the Cities when he suspected Carson had biliary atresia), Dr. Humar (his transplant surgeon), Dr. Baker (his cardiologist) and Dr. Sharp. We've known for years Dr. Sharp was close to retirement. In fact, the rumor has been there for years. We certainly don't begrudge him retirement. From our estimates he is between 75-80 years old.
The three of us left one morning and had Carson's appt. in the afternoon. Grammy picked up Grace from school and they had fun together. We saw the GI fellow first in Carson's appointment. He was very pleased with how Carson was doing. We discussed his labs (rock star!) and the fact he had never had rejection. We talked about the plan to have a biopsy at the end of the month and then most likely decrease his anti-rejection med - Prograf - once again. We talked about the kids who successfully taper down or wean off completely. It will be amazing if he is off completely.
Then we saw Dr. Sharp. The funny part was he didn't even examine Carson. He left that for the fellow. We talked a bit more about "the plan" and then reminisced a bit. Dr. Sharp talked about just how sick Carson was when we first met. Carson was just a few weeks out from his first open heart surgery. It was clear his liver was failing. And he wasn't going home until he had a new liver. And Carson glowed (due to his high bilirubin level). Normal bili is 0.3 - 1.9 mg/dL. Carson's was 35+. He was a greenish-orange color. He looked awful.
Dr. Sharp was the man in charge of the plan to get some calories in Carson. Carson was also tiny. A sick liver means you don't metabolize fat. Carson never had an extra ounce of fat and still doesn't! Thankfully Carson was breastfed for the first few years of his life (yes, years...I know that isn't popular with many but frankly I didn't care. When his team told us it was the best thing for him, we committed to doing it as long as we could). In addition to being tube fed, Carson received TPN and ate whatever baby food he wanted. It was still next to impossible to get him to gain weight. He gained virtually no weight in 3 months.
Dr. Sharp was brilliant. We put so much trust in his and Dr. Humar's hands. They called the shots. They were the commanders of the Carson army. They obviously did a great job!
Carson presented Dr. Sharp with a little scrapbook filled with pics of the two of them through the years. We also included pics of Carson at the Transplant Games in Minnesota (2004) and Wisconsin (2010). When we were all giving hugs to Dr. Sharp it was overwhelming. We were filled with so many emotions. Dr. Sharp was one of the few who knew just how sick and fragile Carson was. He was there throughout the whole journey. Very tough to say goodbye. Then to top it off, Carson looks at him and says "Thank you for rescuing my life when I was an orange, sick baby". Not a dry eye in the room.
In all, the appointment was about an hour and a half long. Pretty long in any medical world! And a trip to the Cities and back in a day is pretty tiring. But it was worth every mile.
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