Steelers Sunday

I can't believe Thanksgiving is coming up! Although it is Sunday, and I am usually pretty bummed because that means Matt and I have to separate for the week, I am excited because it's a short week! My mom will be here Wednesday, then my sister on Thursday and finally Matt, Riley and my dad on Friday morning!  Matt and Riley will have Thanksgiving with the McLaughlin family, then the Everetts will be doing our dinner on Friday. My parents stay at a great place in Shadyside called the Shadyside Inn. They are basically apartments that are refinished and modernized. So we are catering our Thanksgiving meal thanks to Whole Foods and having dinner at their place. I am excited!

Nolan is doing great. He has really been moving around so well. They are so happy with how well he is moving the right side, even his head tracks from left to right. SO THANKFUL! His VAD pump looks clean as a whistle, PTT levels therapeutic, almost done weaning his Ativan and he weighs 17 pounds! You would never know that he was a preemie. Besides having the VAD, he looks so healthy. This is exactly where the doctors want him to be...good and healthy for the BIG DAY!

Today marks day 41 that we have been on the transplant list. So, we are getting close. The anticipation is crazy! It's like being a kid again and waiting for Santa to come. I want to make Nolan's heart day a memorable one...a day of celebration, every year! I am sure people have many questions about the aftermath of a heart transplant and I have been trying to think of ways to answer these questions. So, first I can start by giving you an idea of what will happen post transplant until we are discharged.

When the transplant team approaches us to let us know that they found a donor, this means that they did a background check on the donor and they feel that the heart will be a good match for Nolan. A portion of Children's Hospital of Pittsburgh's transplant team will actually fly to where the donor is located to harvest the heart. Once the heart is removed from the donor, that is when the countdown starts. The heart will have to be place in Nolan within a 4 hour period. In the meantime back at Pittsburgh, Nolan will be prepped for surgery. That actual surgery is less risky than when he had his VAD placed. Once the heart arrives, they will remove Nolan's heart and place in the new heart. In the middle of all of that, he will be placed on a bypass machine. After the new heart is in place, they will observe for an hour while beginning the antirejection medications. Once things look steady, they will close him up and he will spend about 1 - 2 weeks in the CICU. From there we will be moved to the step down to floor 8A (where we are now), which is the Acute Cardiac floor. AFTER THAT, we will spend 6 - 8 weeks with Nolan at the Ronald McDonald house. During this time he will have daily appointments, therapy sessions and physicians will teach us how to properly administer his medications. Once they feel we are on a good course, we will officially be discharged. Nolan will come here every 3 months to get a biopsy of his heart to make sure no rejection is occurring. We will also visit a cardiac pediatrician every couple weeks to a month back at home. Once time progresses, these appointments will taper off. By 5 years out he will only have to come to Pittsburgh once a year.

So, we have a long adventure in front of us. I have a warm feeling inside that he is going to do WONDERFUL. He is so healthy besides his heart condition. And he is such a strong boy! Everyone thinks he is going to be a BIG boy. I used to not be able to envision his future. It was scary because I couldn't see him in my dreams. But the other night I had a dream that I was holding him in an upright position - and he was walking! So, it just gives me comfort knowing we are going to get through this and he will get the life he deserves.

OK - I am off to get some dinner and spend some time with my little guy. Hope everyone had a great weekend! Matt and I had a really nice one.

#nhos
http://teamnolan.weebly.com/
http://nolanheartofsteel.blogspot.com/
SAVE THE DATE!