Short Update to Start the Weekend

Friday, February 21, 2014

Short Update to Start the Weekend

It is so strange to be home on a Friday night! Tomorrow I have an event to go to for work, so it's up bright and early for me in the morning! So, this will be a quick update because I am exhausted!

Awesome artwork done by Mollie Sullivan - high school senior at
Montoursville High School.

Nolan had his biopsy today. From what they saw already, the pressures in his heart are still on the low side, however, it does not cause too much concern to our physicians because they are getting better, and his new heart is still acclimating to his body. We should find out the complete report from the biopsy by Sunday. Matt said the rest of the day went pretty well. Today is Matt's mom's birthday and one of her birthday wishes was to see Nolan, so she spent the day in Pittsburgh and will come back tomorrow afternoon.

They are getting his new med schedule down, so by the time I get there and trained we will give more meds less times a day. We are scheduled to be discharged to the Ronald .McDonald House on Tuesday or Wednesday. I can't believe it! Tomorrow afternoon I will spend the day packing Nolan's things, including larger clothes because I brought 9 month clothing last trip and he is just barely fitting into them!

Flash Back Friday - less than 1 month

You all can yell at Matt because he didn't send me any pictures today! :( I am so glad the biopsy went well, and we receive favorable reports we won't get another one for 4 weeks. When we are back at home we will probably be working with the Hershey Medical Center's Pediactric Cardiologists and they will be fluent with CHP about all routine tests that are done. Any procedures and for all biopsy and check ups we will go to CHP. That is the plan for now!

After work today Riley and I went to Benji's to see all the wonderful ladies that have been working on the benefit coming up on Sunday. I am so grateful I have so many AMAZING people in my life. These girls have worked SO hard and taught me so much. Everyone has! The power of giving and providing support to others is amazing. It is really one of the best feelings in the world to give to others - and I can't want for Nolan's Heart of Steel's non-profit to do that.

Tomorrow my sister comes into town, and I can't wait!

Off to sleep!

#nhos

1 comment:

UnknownFebruary 22, 2014 at 7:48 AM
Prayers and Praise continue for this sweet boy.
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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.