We Have a Happy Boy

Another week has passed. I believe today marks day 62 on the heart transplant list. As fast as these weeks seem to go, September 30 seems like years ago. There are a few of us families that have been between the CICU and 8a (the acute cardiac unit) for some time now. We all have slowly gotten to know each other, our stories and connect because our true feelings that we don't share with others we can share with them. We are all in the same place. It is interesting to hear someone that has the same day to day fears. We all know that our lives will never be the same...regardless what happens. With that said, I am glad I got to know my neighbors here. We all have some amazingly strong children! I know that Nolan's strength gives me the strength to make it through the day. If he can do this, so can I. And of course, my Riley Roo. She gets me through it all.

Nolan has had a great day. I actually got some smiles and he had a good workout under his play gym today. This morning they took him off of his oxygen and he has been doing great without it. Nothing else has really changed. I believe they are going to lower his clonidine tomorrow. He seems less agitated when it comes time to receive one of

his sedation meds, so that is a good sign that we are back to a comfortable state. He did test positive for cultures in one of his caps on his PIC line, however all of his panels have come back fine. So preventatively he is receiving antibiotics. Respiratory wise he sounds much better, so his rhinovirus is improving. They went up a little on the Lovenox because he has a small build up in the pump of the VAD. Nothing they are too concerned about, but something they will keep a close eye on. We will probably be in the CICU until Tuesday/Wednesday, then we will be transferred back to 8a.

Matt left pretty early today, as did his parents. We had a nice, snowy weekend. I am sad because Matt and I will not see each other until Christmas Eve. This week is a little different. I am heading back home Thursday evening because I have a dentist appointment Friday morning...so, Matt is heading back here Thursday evening. We will pass each other somewhere on route 22. Then Christmas Eve Riley and I will head back to Pittsburgh to celebrate Christmas. My sister will come into town, parents and I believe Matt's parents will come for the day. Then Friday they all will head back home and I will stay here with Nolan because Riley and Matt will celebrate Christmas with the McLaughlin family. That is our holiday madness. I am trying to get myself together for Christmas. I guess being home next weekend will be nice because I will be able to wrap, etc.

I had dinner at the Ronald McDonald house tonight with a fellow heart mom, Stephanie. Her son is Nolan's neighbor, his name is Cohen (https://www.facebook.com/TeamCohenAllen). It was nice to not eat cafeteria food and have something homemade. AND it was nice to chat with Stephanie, hear their story and talk about our new lives. Now Nolan and I are watching the Steelers. I hope to do some more Christmas shopping online. Can't believe we are so close! Let's hope Nolan gets an early Christmas present!

ONE MORE DAY CLOSER!

#nhos
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