Day 90

Sunday, January 12, 2014

Day 90

I can honestly say that I really did not think we would be waiting this long to receive Nolan's new heart. I was very hopeful over the holiday that something would happen, but when that came and went, I am now protecting myself and not anticipating that it will happen tonight or tomorrow...or the next. I think it will happen when we least expect it. And, I am OK with that. I know it will happen...and I know it will happen when it is supposed to.

So - on to a new week. Today is a pretty important day. Not only is this day 90 on the transplant list, but today Nolan is 9 monthsold! He continues to amaze me everyday. He has not had the ideal first 9 months of life, but when he is doing well physically, he is such a happy boy. The nurses all melt because of his luscious locks and infectious smile. I swear, he flirts with all the gals. If a male physician, nurse or VAD engineer is in the room they typically just get a stare down. But if a girl is around, it's all smiles! Already a ladies man.

Nolan had a good day. Nothing new to report. Tomorrow is back to a day filled with therapy and visits from the physicians. All of his cultures from the strep infection came back negative, so if a heart were to come tonight they would most likely accept. He will be on preventative antibiotics for the next 4 to 6 weeks. We are hoping to have a good week since last week was a bit of a rough one. Matt left around 11 this morning, and our plan right now is to have Riley come up next weekend. It is hard to believe that it's already mid-January! It is nice looking at the calendar because I KNOW at least by this summer we will be home. I am looking forward to time at our cabin and spending quality time together as a family...I can't wait. It seems so far away.

I am ready for this week! My dad is coming on Wednesday and taking me to a Pens game if all is going well here. I am excited! Oh, one last thing. I have to give a shout out to some very good friends of ours, Kristen Nau and Mike Callahan. Today they got engaged! We are so happy for them and can't wait to celebrate with them soon!

ONE MORE DAY CLOSER!

#nhos
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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.