Smiley Sunday

Day 76. Nolan has really been quite the flirt to the lady nurses today. He is very animated and happy. I have actually been a little worried the past couple of days because he has been sleeping a lot and it looked as though his eyes were vibrating laterally. He also has been having a lot of PVC the past couple days, so I expressed my all my concerns to the nurses and a CT (cardiothoracic) CRNP last night. This morning neurology came by to evaluate Nolan. He seemed to be doing well and was following left to right, moving his extremities and his eyes were dilating appropriately. His eyes could be vibrating due to the sedation, however they were making sure he wasn't having a seizure of some sort. Because one eye wasn't seizing along with the same side of his body, they felt he was OK.
We will keep a close watch on him and if anything continues, they would follow up with a CT scan. Quite honestly, I think I am just overly paranoid. The neurologist assured me that Matt and I are who knows him best and it's OK to be overly cautious. So, that made me feel good that they don't think I am a TOTAL basket case. As for the PVCs, recently they increased his dose of beta blockers, so it may take a day for that to level out. I already notice the PVC's decrease...so again, crazy lady over here. I know we are getting so close, I don't want anything to get in the way of our big day!

We had our routine visit with our CT surgeon, Dr. Wearden and transplant surgeon, Dr. Miller. Every time they walk in the room I get some excitement wondering if they are going to deliver the news...especially Dr. Miller because she is apart of the transplant team. Just can't imagine the moment. I try to, but...this isn't normal life! You don't meet many people that go through this, so it's truly unimaginable.

Nolan and I had some visitors again from home! Pete and Erin Ruhl, friends of mine from Williamsport, are in town for the holidays visiting family. Erin and I were pregnant together and they also have a beautiful baby boy, Burke. I think they were shocked at how big Nolan is! It was wonderful to see them, so thank you guys! We are excited to see our boys play together someday in the near future!

I wanted to close today's post asking for you all to send some good vibes and say some prayers for Faith. Her parents, Nathan and Jamie Polk, have been through a tough year. I have talked about Faith in the past, but she has four complex congenital heart defects and a genetic defect called Heterotaxia. She is on the heart transplant list and was sent back down to the CICU yesterday because of seizure like activities. We have built a bond with this family and want the best for them and Faith. You can read more of their story at http://www.caringbridge.org/visit/jamiegibson.

We need some miracles to happen here at Children's Hospital of Pittsburgh - maybe TWO tonight, one for Faith and one for Nolan. :)

ONE MORE DAY CLOSER!

#nhos
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