We are back from our long week in Pittsburgh for Anna's first evaluation for a liver transplant. It was a little overwhelming, with so many tests and appointments, so it took a few days to process all the information we were given.
We left on the 1oth. The drive wasn't difficult, but long. Very long. Google Maps claims we can make the drive in 6 1/2 hours, but it must not take into account bathroom and lunch breaks, because it took us about 8 hours. No offense to anyone reading this who is from Ohio, but until we hit the western part of the state, near Pennsylvania, the drive was extremely boring. No scenery, just flat farmland.
We weren't able to get into the Ronald McDonald House that night, so we stayed at something else called the Family House. It's similar to a RMH in that you have your own room and bathroom, but the kitchen is community. It was a good port in the storm, but they do need to organize the kitchen a bit better (you needed to just cram your food in to the community fridge wherever you could find room) and turn the heat down below, oh 85 degrees.
Thankfully we were able to check into the Ronald McDonald House for the rest of our stay on Monday. This RMH just opened at the end of October, and is beautiful. It is attached to the hospital, so it was only about a 5 minute walk to any of Anna's appointments. Our room had its own WiFi, and efficiency kitchen. There was still a community kitchen. laundry room, and area with computers, couches, tv and a play area on the top level. It is truly a godsend to anyone who has a child in the hospital there.
Monday evening we were able to meet Bobby, Sonja and Marissa Nofsinger. Marissa is a
That evening we were able to meet the Nofsingers. They are a family from Florida whose little girl, Marissa, had MSUD and was transplanted at the beginning of December. It was great to be able to hear about the transplant from a family who had been through it recently.
Anna's appointments started on Tuesday. Right off the bat was her first round of blood work. She is so afraid of needles, and gets herself all worked up into a bundle of nerves. But she actually did really well. She squeezed my hand, had a teddy bear with her, and got through having 8 tubes of blood taken from her. She was relieved to have the most dreaded part of the evaluation over with.
Next was a chest x-ray and a liver ultrasound. She was a little disappointed with the ultrasound - it wasn't nearly as exciting as the baby ultrasounds she's seen on tv. It was so quiet in the dark in the room, both of us could have fallen asleep. That is, if she didn't have someone wasn't pushing on her abdomen with an ultrasound wand.
After lunch we met with Dr. Shneider, a pediatric gastroenterologist. He was the first of many people we would tell Anna's story and our reasons for considering the transplant. He said that her liver function is excellent, which is great for her - but makes our place on the waiting list lower.
Wednesday's appointments consisted of a lot of talking. We first met with Dr. Finegold, a geneticist who is basically the "MSUD doctor". Then we appointments with the social worker and the psychologist, who we both told our family history to. The social worker gave us a list of various resources we may need during the process. The psychologist also did cognitive testing on Anna. They are studying how the patients' cognitive abilities may improve after the transplant.
Anna had no problem with talking about herself during the appointments. In fact, I think most of the appointments could have ended 20 minutes earlier if she hadn't been chatting so much. Everyone in Pittsburgh now knows we have a cat, that he's 7, and that his full name is Echo Furrybutt Ruter. *sigh*
On Thursday morning we met Dr. Sindhi, one of the transplant surgeons. I was really nervous, because I knew that I was about to meet a man who would one day literally hold my daughter's life in his hands. From the start, though, I really liked him. He's a soft-spoken man, and very easy to talk to, so he put us at ease.
Next we met with one of the anesthesiologist residents, who explained the process of what she will be going through in terms of the anesthesia, and IV's and monitors.
Lastly we met with Bev Park, for the teaching part of the evaluation. We learned more about the actual transplant process, what her stay will be like, medication, etc. We felt a lot more confident after that session.
After that Anna had one more blood draw, and she handled that even better than the first one.
That evening, as I was getting our things packed up at the Ronald McDonald House, Lance met the father of a 12-year-old boy from Brazil, who had MSUD, who was transplanted while we were there. They had stayed at the Ronald McDonald House for over a year, waiting for 'the call'.
Friday we began the long drive home. Thankfully although it was cloudy the weather was good for the trip. We stopped at Lance's sister Kate's too, she lives just across the Michigan/Ohio border. It was good to see them and visit, Anna had fun playing with her cousins, and it broke up the trip. We finally got home around 9 that evening. It felt good to get home! And the cat was happy to see us too!
Now we just wait to hear from Pittsburgh about whether Anna's a good candidate for transplant, and what her beginning MELD score will be.