Friday, May 13, 2005
MIBG scan yesterday
Dylan had his MIBG scan yesterday and as usual, did amazingly well staying still for an hour! He is doing so well at the moment, I would have to say that he is the best he has been since his surgery. The TPN (IV Feeding) certainly is miracle juice! This morning I left his clothes on the end of the bed as usual while I had a shower. When I returned to him, he had dressed himself and was rummaging through the drawers looking for socks! It is the first time he has dressed himself since we have been in New York. Such a simple thing, left me smiling for the rest of the day. It is not so much that he had enough energy to dress himself, but that his morale is now so much higher that he wants to do things for himself again. After hospital we went for another walk through Central Park and this time we had some peanuts for the squirrels. Dylan had so much fun feeding them, he squealed with delight and actually walked around the park for over an hour without his wheel chair. We sat by the lake watching the row boats and then we realized we were sitting right next to a log of turtles basking in he sun. Then we saw heaps of turtles swimming in the lake, even tiny baby ones! Today we went to hospital and weigh in was 16.6kg. The MIBG scan report is not back, so we will have to wait until next week to get the results and to see where we go from here. Dylan’s blood counts were a little low so he needed another dose of GCSF. Because Dylan does not need GCSF everyday at this stage an Insuflon is not logical because they only last 7 days, so the injection needs to be given straight into the leg like you would any other injection. The nurse explained that it costs about $340 a shot if the nurses do it and it costs about $200 if I do it myself, so today I gave him the shot in the leg for the first time. If he has an Insuflon already in his leg, it’s easy and I have no problem giving him GCSF but I was so nervous about giving him a direct injection because his legs are so bony. But I did it with flying colors the nurse said. I think now that I have done the first one, I have the confidence to give them each time. Well, that’s another pass for my nurses degree! Ha Ha. The weather report for the weekend is cloudy and wet, so we will probably hang out at Ronald McDonald House until Monday’s hospital visit. I must go now, it's dressing change time for Dylan's lines, then I have to change the caps, prepare and hook him up to TPN and give him his oral medications...it never ends! But I love being able to do it all myself instead of the hospital, and Dylan loves it too.