Wednesday, August 7, 2013

The news we have all been waiting on...

Today was the BIG appointment with the liver transplant team. Up until a few weeks ago, our baby's liver was perfect, at least that's what we thought. Today a team of specialists were going to evaluate Parker and decide whether he needed a new kidney and liver. The team here truly is phenomenal. I can't stress that enough. The way that they work together as a team is beyond amazing! They keep us in the loop about everything and leave nothing unexplained. 

The liver doctor that we met today has been specializing in this for many years, and has lots of experience with ARPKD/CHF patients. She was able to make sense of everything going on in a way that no other doctor has. Basically Parker's liver is enlarged, but not as large as everyone has made it seem. It is stiff, which is why blood is having a hard time going through the portal vein. We were shocked when she felt his belly, and said "oh well that's not that big". That gave us huge a sigh of relief. She said that his case of CHF is progressing, but not any more rapidly than others. His case is mild. His function is great. He has had NO complications because of it. He is not hindered by the disease. He is otherwise happy and healthy. Therefore, he does not need a liver transplant. Actually, it is possible that he may never need one, but there is no definitive way to tell. They will monitor him every six months while we are here seeing his transplant team, and keep a close eye on his progression.

We could not have asked for any better news! We are truly blessed! We have just a few more things to wrap up before we can head home. Hopefully, we will get to enjoy the city a little before leaving. So far we have been held up at the hospital everyday. My poor big guy is so wiped out from all of these all-day appointments. He couldn't wait to get to his crib, so he is currently crashed out on the living room floor. 

What was really cool at the hospital today was that Adam Levine and Kelly Clarkson were there taking pictures with patients. We didn't have a chance to stop, though. The line was a mile long and we had back-to-back appointments. Ryan Seacrest's charity foundation is stationed in the lobby with a DJ booth, and these appearances are apparently frequent. You can see the booth in the background of the picture. Maybe next time we will get to go down there and see some other cool people!

Tonight, we went to dinner to celebrate. I'm absolutely positive that it was one of the BEST steaks that either of us have ordered at a restaurant. I ordered the filet, and it was tender, cooked to perfection, and full of flavor. It is one of those meals that you are hurting from being so full, but feel guilty for leaving any food behind. The name of the restaurant is Marmont's and it is on Market Street. The atmosphere was amazing. You could go in there casually dressed, yet the ambiance was upscale. The prices were extremely decent given the deliciousness of the meal..

Here are some pictures of the sights we saw along the way.

No comments:

Post a Comment