3/24/11 Final day at Duke

I didn't update yesterday because Riley woke up at 2am yesterday morning and never went back to sleep, so needless to say, I was a little tired last night! He has been sleeping so well and hasn't had a night up like this in a very long time. Fortunately, he woke up in a great mood. Riley loves to walk now, and all the time, so we made circles around the hotel room for quite awhile. I would put him back in the bed to try and get him back to sleep, but he would just get on his knees and bounce all over the bed. A couple of times I dozed for a minute and would wake up when Riley got out of the bed to find him standing on the side of the bed ready for another walk.

As far as tests yesterday, it was Riley's lightest day. He had nerve conduction tests which involves sticking electrodes in different places on his legs and arms and delivering electrical shocks and recording the reaction. I have had the same test several times and it is not enjoyable, but Riley was a trooper. He got very quite and seemed to be curious about what was being done, but didn't really seem to mind it. We were free to leave after this, but Joel and I decided to ride by the clinic and have them take a look at Ri. He felt a little warm and had developed a little cough. Since he was being sedated today, we just wanted to make sure he was still going to be good to go. Also, the only blood pressure reading they have been able to get this weak was low, so we also wanted to make sure it was in the normal range as well. They decided to take a sample from Riley's nose to check for some viruses as well. We assume everything checked out because they didn't tell us any results and they went ahead with today's procedures. We are probably just a wee bit paranoid anyway!

After clinic, Riley, my mom and I headed back to the hotel for the rest of the day. It would be so nice to be able to spend some of Riley's spring break, which is this week, doing something fun while we are here, but since there aren't any nudist stores or attractions around the area, we are stuck at the hotel. Riley and I did swim the past two days. He enjoys it but thinks he is in the bath, so he can't figure out why he is being forced to wear a pull up in the water. Besides the pool, Riley loves taking long walks down the hotel corridors. We have definitely gotten our exercise this week! Last night, we had a visit from one of Riley's nurses from the bone marrow unit, Alicia, and that was great. The night before, Connie, another of his favorites, came to visit with us and have dinner with me as well. It has been nice seeing our old friends. Riley's head nurse, Amanda, will be at clinic today so we hope to spend some time with her as well. We saw her quickly during our unexpected trip to clinic yesterday. After a long day, Riley was ready for bed and did great. He didn't wake up all night, which usually doesn't happen unless he is sick. Being up since 2am will do that to you as wel1!

Today will be a much busier day. We were told to be at the hospital to check in at 7:30am although were we were suppose to check in did not open until 8am. Didn't make much since to us either! After getting checked in, we were taken back to the MRI area. I am in our own waiting room right now since I can't go near the MRI machine because of my implant for delivering meds to my spine. I guess Joel and Riley have been back for about 30 minutes. Getting them back there was not so easy. Riley was given a liquid med that has suppose to help relax him before getting his IV. It may have made him giggle a little more than usual, but other than that, wasn't much help. Putting the IV in itself wasn't too bad. Riley has gotten where he really doesn't mind “sticks” anymore. What he did mind was 4 of us holding him down while we waiting the 10 minutes for the sedative to go in and put him to sleep. He is sooooo strong. Joel had the legs, one nurse had the arm with the IV in it, I had the other arm while also trying to talk to Riley to calm him down, and one nurse did as much as she could while trying to write at the same time. Prior to going in for the procedures, (he will have MRI, EEG and echo cardiogram while sedated), Riley's blood pressure was pretty high. We also were reminded his heart rate got pretty low during his last sedation, so we were told how they would be delivering the sedating meds to try and keep this under control. Just now, I heard the anesthesiologist say they had given Riley something for his blood pressure because it has continued to stay high. He also said his heart rate is hanging out in the high 40s, which is low, but typical with the sedative they are using. He had told us before Riley went under he wouldn't be too concerned unless it dropped to the low 40s. Joel had the choice of going back with Riley or not, but I really wanted him back there and he wanted to go as well. Even if Riley doesn't know he's there, it still gives me some peace of mind.

After these three procedures, which combined will take several hours, we have our clinic appointment with Dr. Martin. He will check Riley over, and hopefully be able to summarize this week's tests for us. After that, we are out of here, hopefully until next year. Mom and I will be going back through Spartanburg to my sister's. I'm sure everyone there will miss Riley. We stopped there overnight on our trip here and Riley had a ball there, as he always does. But this leg of the trip, Riley will be going back home with Joel and I'm sure he will be happy to be in those familiar surroundings as well. I hope the drive straight through to Chattanooga is easy, safe and stress-free! I will stay in Spartanburg until Saturday morning and although I will miss having my little side kick with me, I will enjoy some relaxation, good food and a good audio book on my quite ride back to Chattanooga!

Hope everyone has a safe and happy weekend. I probably won't update again unless there is something new to tell, which we aren't really expecting from these last few tests.