Day 100

Wednesday, January 22, 2014

Day 100

I would have NEVER thought we would still be waiting for Nolan's gift of life at day 100. It's a day of mixed emotion. You are scared because of all the risks associated with being on the VAD or Nolan getting a virus or infection. You are happy because he is doing so well...probably "healthier" than he has ever been. You are sad knowing that the day is coming and he will be intubating again and going through a critical surgery. You are mad because it's been 100 days. You are anxious to begin new life. The feeling of not knowing what tomorrow will bring or the next has now become the norm. We have acclimated to our new lifestyle of traveling and phone calls. It is not what I would want to be doing, but yet it is OK. We are making life work, but my gosh...the day we are home will be like starting all over again. Nolan has lived in a hospital longer than he has his own home. So, coming home will truly be a brand new life for us...in SO many ways. We are ready, but we are nervous! :)

I am not sure how I really feel about the saying that "everything happens for a reason," but I am thankful that we have had time to get Nolan to where he is today. He is beyond ready for surgery. A month ago we would have been scared...two months ago, frighted...now, EXCITED because we will know he will be OK. So, with the situation we have been given, maybe there is a reason it has taken this long...maybe it is so he is 100% ready for a successful surgery and recovery. Only time will tell.

Nolan is continuing to do amazing. Matt said today may have been the best he has seen him to date. He is doing amazing in PT. He did say that he's not really into eating food, but other than that, his gag reflex is much better, which is good. As with any therapy you receive, being consistent is key. He is so ready to be active and mobile. I can't wait to see him without his VAD and being FREE! Today Nolan had his 9 month wellness check-up. He weighs 21 pounds and received his vaccinations. Nolan is bigger than Riley when she was 9 months...and he was 6 weeks early! I think he is taking after his dad.

PLEASE keep the prayers coming. I want to say that it is going to happen soon...but, I am continuing to take life day by day. The day is coming close. Thank you all for the support!

ONE MORE DAY CLOSER!

#nhos
teamnolan.weebly.com

3 comments:

AnonymousJanuary 23, 2014 at 9:24 AM
Your whole family continues to be in our prayers. Keep the faith!
Sr. Ann Marie
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AnonymousJanuary 23, 2014 at 1:35 PM
Just heard the news that Nolan's been gifted his new heart. Praying that the surgery is successful. Your whole family is in our thoughts and prayers.

Patty Beck Henry
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AnonymousJanuary 23, 2014 at 6:32 PM
Prayers from a little place we call Path Valley ~ we've experienced the gift of life through heart transplant. God has a good plan, He is faithful and He is ever present. Shelly Boggs
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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.