My husband was discharged from the hospital a few days later.  A full nephrectomy requires a long recovery period, so his mother cared for him while I remained at the hospital with Lexie.  She was in the hospital for about one week, while she recovered from the surgery (she had been cut open from her sternum to her pelvic area), and while they monitored her for infection (because her immune system had been destroyed prior to the transplant).

We returned home one week later and lived in relative isolation, avoiding all public places except doctor offices, because Lexie’s immune system was compromised.  The transplant team declined my mother’s kidney and recommended we put Lexie on a list for a deceased donor transplant.  At 9 pm on July 12th, we got the call that they had a kidney for Lexie.  We drove 3½ hours to Philadelphia (from our home in Virginia), and began the testing for a cross-match. Lexie was once again given Campath to destroy her immune system, since no one was sure whether the dose 6 weeks earlier was sufficient for a subsequent transplant.  She went into surgery around 5 pm the next day. The surgery went smoothly.  The kidney was functioning before they had her off the operating table, and she was wheeled out of surgery at 10:30 p.m.

We were trained on all the new medications and on how to take Lexie’s blood pressure.  Ten days later, we were able to take Lexie home.  Lexie’s immune system was completely destroyed well beyond any intended level of suppression, so we continued to live in relative isolation from mid-July until March of the following year.  We did not have family living near us, but we had a wonderful support system of friends and church family who delivered meals, picked up groceries and ran errands for us.  My husband worked from home for two months during this time and avoided all public places aside from his work office for the remaining 6 months. I work from home, so I was able to avoid all public places, with the exception of medical offices.

Prior to the transplant, Lexie had never been able to eat solid food.  She was on a liquid diet, which she could barely keep down.  Within days of the transplant, her reflux improved and Lexie began eating solid food for the first time in her life.  By the time she was 3 ½ she was eating everything in sight.  She was much stronger, much more active, and growing fast. Suddenly, the child who had struggled her whole life to make it to the 5th percentile for height and weight was in the 50th percentile.

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