FUN IN THE SUN FRIDAY!

Friday, June 20, 2014

FUN IN THE SUN FRIDAY!

What a beautiful day it was in PA. I am glad we had the sun because we had a long night with Nolan. We didn't even get him down until past 11:30 pm and then he got up again about an hour or so later screaming. He was also having some congestion and coughing, which I still think has to do with allergies. I am thankful for Matt because he ended up sleeping downstairs with Nolan while he was in his swing.

So, what was wrong with Nolan? I ended up taking him to our primary care doctor just to make sure everything was OK. We decided to start doing some albuterol treatments through the day, and our physician assistance noticed that his gums were really swollen. With that said, we are pretty sure he was cutting teeth last night, which caused his crankiness. If his coughing continues we plan on contacting our PA and she will prescribe an antihistamine or him.

Our nurse said that Nolan had a good rest of the day. He took a 3 hour nap...most likely because of the long night. We had a nice night hanging out at home, ate dinner outside and Riley played with friends. This weekend we plan on spending in town, which I look forward to getting stuff done around the house.

OH - labs came back and his liver enzymes went down again, however his FK (prograf) level is low so we had to increase his prograf .3 ml.

So, we are hoping or a quiet night! Nolan, my dad and a few friends of mine are going to run a 5K in the morning (OF COURSE, NOLAN BEING PUSHED!)

Happy weekend!

#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.