A Better Day

Packed and ready to head back west! Hard to believe another work week is coming to a close and we are approaching our 90th day on the transplant list. It wasn't the best of weeks for Nolan, however it certainly wasn't the worst. Nolan had a restful night and a good day. The blood transfusion definitely seemed to help and his lab results did come back positive for staph (staphylococcus). Because of that they had to culture his broviac and blood stream; those results will come back within the next couple days. They are not sure if it was contamination in the specimen tested, or if it is truly staph; for precautionary measures he is on antibiotics and is currently still "listed" to receive a heart. It was a tough 48 hours or so. Matt was seeing behavior like he did when Nolan was having major withdraw, so I am happy that he was there advocating for Nolan and making sure that everything was being followed through properly.


So, onto the weekend. Because Nolan had a tougher week, and he could possibly have an infection, we felt it would be best for Riley to stay home. Someone needs to be with him throughout the day and keeping Riley in the room for that long just ends up stressful for everyone...so, she is going to spend her weekend with Matt's parents. I am sad because I was REALLY looking forward to her coming and spending time with some of the other families kids. SOON :)

Matt said overall today was a good day. Nolan enjoyed some music therapy...and again, not sure about PT or OT. Our transplant team and cardiothoracic surgeon were in to check on Nolan a few times to make sure we were still OK to move forward with a transplant should a heart come. So far, so good.

I had a pretty good day at work, and tonight a good family friend, Deb Morin, and her daughter Brittany, came over for pizza and to hang with Riley and I. It was fun to just lounge and relax! Riley is always entertaining, of course! Riley spent her day in Harrisburg with my mom and dad. She got to visit my dad's office and see the House of Representatives. Of course she walked in like she owns the place. My parents said they had a great time with her and she really enjoyed the farm show and hanging our with Pop and Gaga!

Tomorrow I will head out and hope to get to Pittsburgh by dinner. If I do not post tomorrow, I will make sure to Saturday!

ONE MORE DAY CLOSER!

#nhos
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