A Good Weekend

And so another week begins!

The rest of our week in Pittsburgh was busy, but successful! Thursday we had an early morning appointment with our transplant doctors and transplant coordinator. During this appointment we had an EKG done, as well as an echocardiogram. Everything looked great and both Dr. West and Alice, our coordinator, were happy with how Nolan looked. Probably our number one concern, these crazy liver enzymes. They are still high, but steady. Our GI doctor at CHP has been great to work with. He is in touch with us on a weekly basis discussing Nolan's lab results, other lab panels he has ordered and asks if we have any thoughts or suggestions. He still thinks that Nolan's high liver enzymes are most likely due to medications, however he has ruled out any metabolic or genetic disorder...so that is good. Tuesdays is when all the people involved in cardiac transplant get together and discuss all cases, so I think by tomorrow we may know if any medication changes will be made due to the liver enzymes. As for now, Nolan seems to be doing great (better than ever), so we all know he is feeling good.

Back to our week. Friday we had to be at CHP by 6 am for the biopsy. Nolan went in to his procedure about 7:45 am, and the cath takes about an hour. Once he was sent to recovery, Dr. Miller let me know that all of his pressures look good and she didn't suspect for their to be any issues, but that was up to the pathology reports. We hung out with Nolan in recovery until about 11:30 am...then we got in the car and headed back east for Williamsport! We knew that if there was rejection we would have to turn around and go back to CHP, but I think both Matt and I knew that everything was OK...so we took a chance! On our way home we got his results, and his status was 1a, which is good! He has also been removed from two more medications...so currently he is only on 4 medications! When we were at the Ronald McDonald House he was probably on about 15+! So, life is getting easier!

Before we left CHP, we stopped to see some of our nurses and I also visited with a family I got to know before we left Children's. Sarah's daughter, Elsie, received a heart a little over a week ago. She is 6 years old and doing amazing! I wanted her to meet Nolan and to see how they were all doing. It was nice to see all of them smiling! ALSO - it is great to see all of our amazing nurses at CHP. We miss them all dearly!

When we got back to Muncy we relaxed with my mom and dad, and got reunited with our baby girl. Riley had a great time in Florida...she got to experience her first plane ride, her first roller coaster ride, her first log flume ride...and many other firsts, so I am a little sad that Matt and I missed those moments. I am so grateful that my parents took her to see my Nanny (mom's mom) and visit Florida! Matt and I are very fortunate to have amazing parents that are willing to help us out and enjoy hanging with our kids!

Saturday into Sunday we decided to spend at the Cabin. It was cold, but nice to get out there and relax. Being out there takes away the stresses of life. I look forward to our summer. Saturday night we got to hang with the Uzupis' (Steve and Betty) and Christs (Randy, Ashley and Colt); we had a good fire that all the kids enjoyed...and the adults! Sunday we had a nice day with Dick, Carol and Randy Everett and Matt's parents, so all around a great weekend. We are lucky to be surrounded by such amazing people in our life!

What does the rest of the week hold? Tomorrow I believe Nolan has OT. Our nurses continue to be AMAZING! Nolan is doing great physically. He can get on all fours and is rocking back and forth. I bet he is crawling within the next two weeks. All around he just looks amazing. I can't believe how far we have come.

I hope everyone had a great weekend and a marvelous Monday! We are still slowly acclimating to our new life. I have a list a mile long of things to do...send thank yous, hang pictures in Nolan's room, clean Riley's playroom, etc. I want to express to you all how much you all and our community means to us. I think about all the support we have received and continue to receive daily. We truly feel SO extremely lucky to be from Muncy...Lycoming County...Williamsport area. VERY proud.

PS: don't forget to VOTE tomorrow :)

#nhos