Monday, August 5, 2013

Extremely impressed!

Our appointments started at 9:00 this morning, but we were running about 10 minutes late, due to dialysis and traffic. When we arrived, we had plenty of new patient paperwork to fill out. That took about 30 minutes and then they took us straight back. Things went extremely smooth and pretty quick as far as the appointments were concerned.

Unfortunately, Parker was not in the best of moods this morning. We weren't sure exactly why at first, but it didn't take long to figure out. We had Dr. Beluarte- the transplant director, Dr. Abt- the transplant surgeon, and a nephrologist in the room and he was in complete fits. Next thing you know, he is ripping some monstrous toots. Poor baby was straining so hard. We think he is constipated, so we are working on that problem.

The doctors were all extremely nice. They have already reviewed his case, so they wanted to see him, put their hands on him, and get a visual of what exactly is going on. The good news is that Dr. Abt is positive that even though things are enlarged, he can still fit an adult kidney in his abdominal cavity. He said "Unless your donor is a giant, we shouldn't have problems". I assured him that Patty was definitely not a giant. He is extremely hopeful that Parker will not need a liver. He said that they have had plenty of patients transplanted with portal hypertension. He did say that there was a slight risk that the liver would decompose after transplant, but that there was no way to tell if or when that would happen. It could be immediate or never. They would change some of the immunosuppressants used in an effort to prevent this. He said that we would not have a final decision on if he needs a liver transplant until the end of the week. We meet with the liver team and hepatologist on Wednesday, and they want to conference together as a team afterwards to make a decision together. 

After meeting the doctors, we met the social worker. She is pretty awesome. Our social worker at home generally walks in asks how we are and if we have any questions, and then walks out. Here, however, she sat down and talked with us in detail. She asked a lot of questions, but told us beforehand not to feel offended by any of them, and that she asks all patients the same questions. She is the one who sent us the vouchers for the airfare, and is currently looking for other options for housing. She gave us a huge binder to help us organize all of his records and paperwork from this trip. 

The most amazing part of today was that we finished all of our appointments in 2 hours! That is unheard of in New Orleans! 

After the hospital we got lunch at a place called Smoking Betty's and it was delicious! Then we came home and took naps. It felt great to catch up on sleep, and Parker desperately needed it! 

This evening we got to meet up with some very special people to us. If you remember the beginning of this blogging experience, I talked about Lindsey and Stephen, who were both vital in our journey. Stephen was born nine months before Parker, and also has ARPKD. His mom, Lindsey, has been a huge support system for us since I was pregnant. Tonight we finally got to meet in person! We were super excited about this! Parker was his usual grumpy self at first. He's not friendly with new people, usually. By the time we left, though, he was giving high fives and blowing kisses. Hopefully next time he will be more friendly. 

Tomorrow we have a family meeting at 11:00, lunch, and then we meet the nutritionist and pharmacist. I will update tomorrow evening. 

1 comment:

  1. I LOVE these pictures so much!

    So happy to hear everything went well...