March 2012 - Three Year Transplant Follow Up

This week, we made the trip back to Duke for Riley’s 3 year post transplant check –up. It is so hard to believe it has been three years! A lot has happened and a lot has changed. I know I don’t update very often, but just living life takes up so much time!

We left Sunday morning for the 7 hour drive to Durham, NC. Joel and I decided it would be easiest to ride together this year, and we took Katie, one of Riley’s nannies. The trip was uneventful and Riley was a very good boy. We made several stops to let him get out and walk, and the 7 hour trip ended up being about 8 ½ hours.

Riley was pretty much ready for bed by the time we checked in to the hotel. I went to bed with Riley, and as usual, he woke up sometime during the night, I believe around 12:30am. We both got up and were standing there and Riley leaned up against me. I turned a little, and as soon as I did, Riley fell over in the floor. When I helped him up, it was very obvious that he was not able to stand on his own. For about a year now, Riley has been losing the ability to move or control the right side of his body just before having a seizure, so I knew that was what was happening. I asked Katie to go wake Joel up and have him come in our room. We treated Riley with diastat and prevented the seizure from happening. So much for our first night there!

Monday, we had appointments beginning at 9am. He had his vitals taken, and now weighs 65.5 lbs. He was 48 lbs. last year! He has also grown three inches since his appointment last April. He had about 10 viles of blood taken and we are still waiting for the results of his blood work. He also saw Dr. Martin, his primary doctor since beginning this process on Monday. Everyone was very pleased with the progress Riley has made over the last year. I don’t know if it was because of being in a different place or what, but Riley was up from 1:30am – 6am. This made for a very long day for mom on Tuesday.

Tuesday, Riley was scheduled for an MRI and echocardiogram, both under general anesthesia. The happy juice he was given before being taken back that should relax him did nothing, or possibly made him more determined not to relax or sleep. Very much like his meds sometimes do at home! When he was brought back after the MRI, his body temperature had dropped to 93. He was covered with warm blankets, but that didn’t bring it up, so the nurse decided to use a “bear hug” apparatus. This is a “blanket” that looks like a pool float. It has a place to insert a tube that pumps warm air in under the blanket. This worked after a couple of hours, so we were just waiting for Riley to wake up from being sedated. When he did, he rolled over and immediately ripped the IV out of the top of his hand. Blood went everywhere! After we got that taken care of, we were able to leave for the hotel. Riley had a long day and was ready for bed pretty early. Katie was up with him a couple of times over night.

We don’t have any results yet from the tests done this week but don’t expect to find out any new information really. There are a couple of treatments we are going to try when we get more information from Dr. Martin that could be exciting. It is really good to be back home after such a long, quick trip!