Day 50

Well, I believe today marks day 50 that Nolan has been officially listed for a new heart. We are getting into the HOT zone when anything can happen at anytime. OF COURSE, it could be months from now before we receive the gift of life, but I am so hoping it is soon. It was be the Christmas present of a lifetime! It is truly the gift that keeps on giving.

Unfortunately, Nolan had a rough day today. He had continued agitation throughout the night, so this morning began with a CT scan to make sure there was nothing going on. The scan showed a small subdural hematoma (bleeding inside the skull, but outside the brain). They explained to Matt that this could be because of the withdraw. The headaches and high heart rates could have caused this small bleed to form, which may explain some of the agitation. With that said, it is a good thing we had this CT scan done so they can keep a close eye on this bleed. Neurology states that this bleed should not cause him any physical limitation and hematology gave the OK to continue Heparin at a minimally reduced dose. They also proceeded to increase his doses of sedation to keep him comfortable because it is most important to keep him anticouagulated until the heart arrives and to keep his VAD clear.

The last I talked to Matt he said that Nolan seemed to slowly become more comfortable, so I think our focus will be just to keep him HAPPY, HAPPY, HAPPY. It is crazy to think that we have been in this situation for over 60 days. Matt and I are continually giving each other pep talks because this lifestyle and the constant worry is starting to wear on us. I think the holidays make it especially hard because we aren't doing our normal Christmas traditions. We keep reminding ourselves that is it just one year...and it will be a Christmas we will never forget...whether we get a heart before then or not. I have to continue to remind myself to take life one day at a time, not worry about the little things. Keeping our family united and on the same page while living apart is important. And, of course, remaining strong for Riley. The rest of life can wait until we are all home. We have plenty of holiday seasons ahead of us.

On that note, I am about to meet some of my gals to discuss Nolan's benefit in February. I want to give a shout out to Alicia Boyer for setting up the benefit tomorrow at Buffalo Wild Wings (AND THANK YOU BWW!!)

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