Thursday, July 17, 2008

Clinic Update

We had a pretty good report from clinic yesterday. Coming off of a hard weekend, it wasn't the best idea in the world to not feed the poor Bug as he woke up. He took about a half of an ounce of pedialyte before he realized it wasn't his formula and gagged. Unfortunately, he couldn't have a regular bottle due to his sedated echo. He cheered up when Mamie and Aunt Alex showed up to escort him to his appointment! We started off in the lab for a blood draw, as always. Again, we had success on the first try - yeah for the phlebotomists! One of our fellow transplants, Natalie (22mo), was also in the lab though, and I think Keegan cried a bit more because he could hear her so upset. We had a slightly better blood report than last month. We still went up on his main immunosuppressant (surprise). His white blood cell count was still down, so we will not start the other suppressant back up. It depends on who you ask, but I like the fact that his WBC is low - that means that he does not have a lot of "fighter cells" present, i.e. his body's not fighting the "foreign" heart. From a transplant perspective though, some doctors still have a hard time accepting that a body (even a baby body) would not reject a transplanted organ. Those doctors think it's more important to be on the immunosuppressant which Keegan has stopped for now. Others (like me) see it as a promising glimmer of hope that Keegan may not need as much (or any) suppression as he progresses because his immune system has adopted the new heart. Anyway, his MCV levels were still a bit high, so we will stay on the folic acid supplement. He is still indicating a bit of anemia, despite being on an iron supplement, so we will have a complete iron study done next week. This will help us determine how much iron is really in his blood and what might be causing the anemia. In better news, we stepped down his steroids in anticipation of stopping them altogether next month. YEAH!

Next, we were off to xray. Again, we had some newbies. This made Keegan quite unhappy because he was looking forward to seeing his "girlfriends". We had to repeat the xray due to his hissy-fit, but he made it through. His xray looked great according to Dr. Barnes. Then we went back up to clinic for his sedated echo. We were hoping to skip sedation this month, but due to all the fussiness and general un-Keegan-ness of late, we all felt that good, clear pictures were more important to ensure there was no heart-related problem present. Nurse Aren was a rockstar and got Keegan to take every drop of the nasty, nasty, nasty sedation medication. Keeg was out in less than 2 minutes and stayed asleep for the entire echo and EKG. His function looked great according to Dr. Barnes on both of those tests too.

On a not so great note, he had no weight gain in the last month. We went to the pediatrician Tuesday to make sure he didn't have an ear infection or anything that would have caused his recent upset and to make sure he was safe for sedation yesterday. At the pediatrician, he weighed a little less than half a pound more than last month. The clinic scale read exactly the same as last month though. The transplant team and I came up with some strategies for working on his eating, and we'll watch his weight closely. We're still hoping that he'll hit a growth spurt after he is off the steroids in a little over a month.

We saw Dr. G and Dr. Leonard yesterday, and they were both so pleased with Keegan's progress. It is always such a blessing to see them both. Not much else going on here. Keegan will have another blood draw next week to watch his immunosuppression and his iron levels. We'll post again then. I will try to get some new pictures up soon, but not having our regular computer has made picture-posting a challenge. Keep your eyes on the picture site for new ones soon, and we will be posting more info here about the fishing tournament soon. We hope you are all having a wonderful week, and we hope you have an even better weekend. Thanks for remembering Keeg!