Day 81

Friday, January 3, 2014

Day 81

All the doctors have told us...we can promise you, he will get a heart this year! :) Today marks day 81 on the transplant list. We were asked if we would want to know when someone gets a heart transplant at CHP and if we would want to know whether they rejected a heart for Nolan. I said yes to both, and today a child received her gift! We all agree that it's exciting that things are happening here! And they always say that hearts come in clusters, so let's pray we get a few more for the rest of us! :) I hope the surgery went well today, as I am sure it did. Lots of prayers to that little girl, her family and the donor family.

Things here have been good and busy! I was going to leave Thursday to head back home, however with the crazy weather and having a tough time leaving my boys, I decided to stay the rest of the week and through the weekend. I will head back to Muncy on Sunday to see my baby girl! Next weekend I am going to bring Riley with me so she can play with Lacy, Faith's big sister. It should be fun and will be nice to have our family all together.

Nolan has been doing AMAZING in physical and occupational therapy! We have been getting him out of bed, working on his core and rolling. They are impressed! Not only that, today Nolan ate almost a tablespoon of applesauce. I know that doesn't sound like a lot, but this is the first thing he has put in his belly since September 30. It is promising to know that he has the swallowing down and handled the food. Makes me super happy.

Yesterday Matt's brother, Blaine, came to visit us for the day/night. We spent the day with Nolan (Matt and I worked) and went out to dinner. It was nice to see him. We had a snowy day/night...and now the temperature is CRAZY cold.

Knowing that someone received their heart today brings me hope. We are going to get there and this is going to happen! I honestly felt major anxiety all day just thinking about our day, or one of the other kids day that we have gotten to know and care for. I feel like it's not far away us...all of us.

Nolan is about to take a nap, so I think Matt and I are going to grab some dinner somewhere. I hope everyone is having a great start to the new year! I am so glad to spend some time with Matt and can't wait to see my baby girl.

ONE MORE DAY CLOSER!

#nhos
teamnolan.weebly.com
DON'T FORGET! MARK YOUR CALENDARS!

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About Nolan

Nolan was brought by Life Flight to Hershey Medical Center on the evening of September 30, 2013. Earlier that day he went to the doctor for typical cold symptoms and was then sent to Susquehanna Health's Emergency Department for further testing and breathing treatments. After having many tests done, an X-ray showed what was believed to be an enlarged heart. An ultrasound confirmed this condition and he was quickly transported to the Children's Hospital at Hershey Medical Center. It was believed that Nolan was suffering from a viral infection in his heart called myocarditis, which is an inflammation of the myocardium, the middle layer of the heart wall. After going through a series of treatments at the Children's Hospital at Hershey Medical Center and not showing any improvement, the team of physicians felt best that he be sent to the Children's Hospital of Pittsburgh of UPMC.

Nolan was flown to Pittsburgh on Friday, October 4. After several days of observation, Nolan was diagnosed with dilated cardiomyopathy. He was placed on a ventricular assist device (Berlin heart) which pumped the left side of his heart. Nolan spent 101 days on the VAD. He received the gift of life on January 24, 2014. We are forever grateful to his donor family for such a selfless act. As their lives have changed forever, so has Nolan's. They gave him a second chance at life.