Listing Day

Sorry for the late post!

Today was actually a good day. It was the first day that I have felt good and positive. This is the best that I have felt since this all started. It began after getting to Nolan's room at 7 am and hearing that he had a good night and his recovery from the VAD placement surgery was progressing nicely. He also just looked better, MUCH more comfortable, low heart rate (good thing!) and the VAD was pumping well. Now that he is on the VAD, his heart doesn't look dilated as it did before, so they had to make sure that there was no damage to the right side of the heart. They did an echocardiogram and EKG, and everything seems to be settling well.

The VAD device is a pump that sits right below his chest. There are valves and it acts as the left side of his heart. There is a large box and computer that sits at the end of Nolan's hospital crib and this is how the device is pumped and adjustments can be made. Hopefully by tomorrow he will get his breathing tube out and slowly taken off of any sedation. They will place back in a feeding tube to slowly start feeding again. In about a week or two we will be moved from the CICU to a regular hospital room. That is where we will wait for Nolan's new heart.

That being said - today marks day one. Nolan officially was listed as a candidate for a new heart. This will be a whirlwind of emotions when the day comes. All of this still seems so unreal to me, but I have come to terms with it. This is how we move forward in order to have our beautiful boy in our life. It has opened my eyes to where my philanthropic efforts will go towards in the future and fighting for further research on children's heart disease, specifically dilated cardiomyopathy. We have agreed to have Nolan's heart to be used for research and for him to be followed for other research. Whatever we can do to further education on the how's and why's to cardiomyopathy, we are willing to help. (MORE ON THAT IN THE FUTURE!)

So - good day because Nolan was good, we were officially listed and last, but not least, Fred and Janice Springman spent the day with us. We visited for awhile with Nolan and then went out to lunch. It was so nice to see them (they are like my second parents) and I am sure it was good for them to see Mr. Nolan.

We hope to continue to have these good days leading to the day Nolan receives his heart. This whole experience, albeit a terrifying one, has really opened our eyes. I am beyond grateful for all the support everyone wants to provide. I do plan on starting something on Nolan's behalf to support research towards cardiomyopathy and pediatric heart disease, I just need to do some research. I know that many want to help us out financially, and we appreciate it so much! It is honestly hard to tell what will be covered by our insurance and what will not. We are just in the beginning. The kindness of others is really overwhelming - we have even had some anonymous help...and there is nothing much more to say than THANK YOU. Matt and I feel so blessed that we have so many people fighting for us. We love you all.

Please continue to send us all the love and prayers - I know I pray and thank each of you every night. Just look at the wonderful picture I captured tonight out of Nolan's window. I know we have some wonderful angels watching over us here in the Steel City.