April 14th Clinic Update

We had a great clinic visit this morning. Thatcher gained almost a pound since Monday and is now almost 16 pounds. He had labs drawn, which they got in 1 stick :), and the doctors are very pleased with his progress. Dr. Mazariegos was there today and took out the remainder of Thatcher's staples, commenting that his incision looked very nice.

Like Vandy, we also have access to Thatcher's labs and vitals online so I usually see them before the doctors have a chance to call. I know only enough to know what is "good" or "bad" and normal range. We are of course still learning as we go along. All three of his "liver labs" looked good and his medicine levels were stable. They mentioned going home next month and the possibility that, depending on labs from Monday, we may only have clinic once next week! I was super excited...plus the sun is actually shining here.

While Thatcher is still doing well, the coordinator called a few minutes ago to say that after discussions with the infectious disease doctors, they want to place a pick line in Thatcher in the morning and begin a 2 week round of an anti-viral medication (Gancyclovir). He also had this while he was an inpatient to prevent/treat a virus called CMV.

I try to censor the amount of technical informaton I post, but as I have mentioned in the past, transplant is a balance between rejection and infection. Briefly, CMV (Cytomegalovirus) is a common viral infection most adults have been exposed too. It is not serious to most healthy people, however, it is of concern to people who are immunosuppressed. Thatcher is of course immunosuppressed and is actually more at risk for CMV because he received a CMV positive liver from me and shared my CMV positive blood in utero. (Thatcher's labs show some CMV antibodies although they do not know if he was exposed or if it's from me.) Since we are in that first 3 months post transplant window, they want to run this 2 week course of meds to prevent CMV.

I don't know that this is considered a setback...I would like to think it is not. However, I certainly felt deflated after getting off the phone. We will report to same day surgery at 6:30 in the morning to have the pick line placed in order to administer his meds from home/Ronald McDonald. At least we don't have to be inpatient I guess. They are really on top of things and simply do not want to risk him getting this virus.

This may be par for the course this first year so it is important to stay positive and not get discouraged (I have to tell myself). This is certainly a marathon, not a sprint. So please say a little prayer for Thatcher in the morning. Thatcher has had 1 other pick line, and I know getting it placed is painful.

I leave you with this self-portrait...