Wednesday, August 03, 2011
Anthony's Clinic Visit and the Transplant Reunion
My grandmother sent me a sweet email to remind me that I still haven't updated on Anthony's clinic visit. Thanks, Gram!
So after the zoo on Friday morning, we went to McDonald's for lunch and back to the hotel for a quick rest.
We got to the hospital around 1:30 and wandered to the cafeteria for a quick cookie and to show Anthony the "sweets display". As you walk into the cafeteria, before you even get to the area to grab a tray, there is a big glass case with all kinds of delicious treats: cookies, cakes, pies, donuts, sugary croissants...YUM! That cafeteria puts all other hospital cafeterias to shame (and there are a few good ones out there). It took a while for the boys to decide on their treats (Anthony: oatmeal raisin, Benjamin: sugar cookie shaped like a Christmas tree (in JULY?), iced in green, with sprinkles, me: chocolate cake).
From there, we checked in at clinic and sat down in the waiting area to enjoy a few rounds of UNO before being called back. Almost as soon as I dealt the first hand, a voice came over the loudspeaker, "Attention, please. Attention, please. There is a fire emergency in your area. Please proceed to the nearest exit." No one moved, everyone looked around confused, and I could see the panic in Anthony's eyes. We all did eventually file out of the building. We hung around outside for about 10 minutes and then we were let back in. No fire today!
Once back inside, we played three or four rounds of UNO and then were called back. Anthony's blood pressure, height, weight, temperature, and eating habits were all recorded and deemed normal (100/64 for his blood pressure is all I remember). The nurse coordinator talked to Anthony about his medicine, and asked if he takes it regularly. She asked a few other questions about school, his likes and dislikes, what has he been up to this summer, etc. I just sat back and let him answer all of the questions. It's fun watching him take charge of his own "care".
The doctor came in (young, attractive, never got his name) and talked to Anthony, too. He checked out Anthony's scar, palpated for his liver and spleen, and asked a lot of the same questions the nurse coordinator asked. Again, Anthony answered everything.
The main question I had for the team was about weaning Anthony off of his anti-rejection medicine. The medicine he takes to fool his body into thinking the transplanted liver is actually his can be hard on the kidneys. Really hard on the kidneys. I don't want to get to that point with Anthony. But right now his kidneys are fine. VERY fine. And if they do start to go bad on this medicine, there is time to fix that. So right now the stance they're taking is, "If it ain't broke, don't fix it." and that's fine by me. Even slowly taking Anthony off of this medicine puts him at risk of rejection and losing the transplant. That's super-scary to me; even scarier than kidney issues that can be fixed.
That evening we went to the CoCo Key water resort that is actually inside the hotel where we stayed! It has one big water slide, four smaller ones, some other fun water features, and a splash pond for the littler kids. I don't have any really good pictures of that...it was hard to keep up with both boys AND keep my camera from getting wet! I have a video of Anthony and Benjamin sliding down a small slide together. I'll try to post that soon.
The following day was the transplant reunion. We went to breakfast and then to the Kids' Playroom that the hospital sets up (all in the hotel where we were staying). There was an inflatable bounce house, baseball, golf, target practice, face painting, ring toss, Plinko, Spin Art, and much more. At each of the game stations, you could earn points. Those points could be traded in for a toy at the end of the morning. Anthony chose a game called "Guesstures" and Benjamin chose a fire truck. We went back to the room and played with the games for a little while and then went back to the reunion for lunch.
After lunch, we were able to visit with some of our transplant friends (and we made some new friends!), Anthony got in on the group photo of all liver transplant recipients present, and he was interviewed for the University of Nebraska Medical Center's promotional video! He did a stellar job. It will be posted on You Tube soon, and I'll either imbed it on this website or provide a link so everyone can see it.
We had dinner that night with a fellow transplant recipient. Ali is heading off to K-State for college. She received her liver transplant when she was an infant. We ate with Ali and her mom, Michelle.
The flight home was easy, and we were all glad to see Mark/Daddy in the New Orleans airport. I think next time we'll make a bigger vacation out if it and drive, though.
So after the zoo on Friday morning, we went to McDonald's for lunch and back to the hotel for a quick rest.
We got to the hospital around 1:30 and wandered to the cafeteria for a quick cookie and to show Anthony the "sweets display". As you walk into the cafeteria, before you even get to the area to grab a tray, there is a big glass case with all kinds of delicious treats: cookies, cakes, pies, donuts, sugary croissants...YUM! That cafeteria puts all other hospital cafeterias to shame (and there are a few good ones out there). It took a while for the boys to decide on their treats (Anthony: oatmeal raisin, Benjamin: sugar cookie shaped like a Christmas tree (in JULY?), iced in green, with sprinkles, me: chocolate cake).
From there, we checked in at clinic and sat down in the waiting area to enjoy a few rounds of UNO before being called back. Almost as soon as I dealt the first hand, a voice came over the loudspeaker, "Attention, please. Attention, please. There is a fire emergency in your area. Please proceed to the nearest exit." No one moved, everyone looked around confused, and I could see the panic in Anthony's eyes. We all did eventually file out of the building. We hung around outside for about 10 minutes and then we were let back in. No fire today!
Once back inside, we played three or four rounds of UNO and then were called back. Anthony's blood pressure, height, weight, temperature, and eating habits were all recorded and deemed normal (100/64 for his blood pressure is all I remember). The nurse coordinator talked to Anthony about his medicine, and asked if he takes it regularly. She asked a few other questions about school, his likes and dislikes, what has he been up to this summer, etc. I just sat back and let him answer all of the questions. It's fun watching him take charge of his own "care".
The doctor came in (young, attractive, never got his name) and talked to Anthony, too. He checked out Anthony's scar, palpated for his liver and spleen, and asked a lot of the same questions the nurse coordinator asked. Again, Anthony answered everything.
The main question I had for the team was about weaning Anthony off of his anti-rejection medicine. The medicine he takes to fool his body into thinking the transplanted liver is actually his can be hard on the kidneys. Really hard on the kidneys. I don't want to get to that point with Anthony. But right now his kidneys are fine. VERY fine. And if they do start to go bad on this medicine, there is time to fix that. So right now the stance they're taking is, "If it ain't broke, don't fix it." and that's fine by me. Even slowly taking Anthony off of this medicine puts him at risk of rejection and losing the transplant. That's super-scary to me; even scarier than kidney issues that can be fixed.
That evening we went to the CoCo Key water resort that is actually inside the hotel where we stayed! It has one big water slide, four smaller ones, some other fun water features, and a splash pond for the littler kids. I don't have any really good pictures of that...it was hard to keep up with both boys AND keep my camera from getting wet! I have a video of Anthony and Benjamin sliding down a small slide together. I'll try to post that soon.
The following day was the transplant reunion. We went to breakfast and then to the Kids' Playroom that the hospital sets up (all in the hotel where we were staying). There was an inflatable bounce house, baseball, golf, target practice, face painting, ring toss, Plinko, Spin Art, and much more. At each of the game stations, you could earn points. Those points could be traded in for a toy at the end of the morning. Anthony chose a game called "Guesstures" and Benjamin chose a fire truck. We went back to the room and played with the games for a little while and then went back to the reunion for lunch.
After lunch, we were able to visit with some of our transplant friends (and we made some new friends!), Anthony got in on the group photo of all liver transplant recipients present, and he was interviewed for the University of Nebraska Medical Center's promotional video! He did a stellar job. It will be posted on You Tube soon, and I'll either imbed it on this website or provide a link so everyone can see it.
We had dinner that night with a fellow transplant recipient. Ali is heading off to K-State for college. She received her liver transplant when she was an infant. We ate with Ali and her mom, Michelle.
The flight home was easy, and we were all glad to see Mark/Daddy in the New Orleans airport. I think next time we'll make a bigger vacation out if it and drive, though.
Labels:
anthony,
benjamin,
transplant: anthony,
vacation
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