Another Thanksgiving has come and gone. We had a nice family weekend. I missed my post yesterday because Matt, Riley and my dad got into town and our day was filled with visiting Nolan and then we had dinner over at my parents hotel. We ended up getting back to the Ronald McDonald house late.
Nolan is doing OK. He has had a tough couple days. Matt came over to be with him early this morning and said Nolan was inconsolable. We believe it is mostly due to weaning his sedation. Currently Nolan is on three different sedatives; methadone, Ativan and clonidine. The plan that has been going on the past 4 weeks is to wean .1 methadone one day, .1 Ativan the next day and the third day do nothing. Once he is weaned off of the methadone and Ativan, then they work on the clonidine. The clonidine is actually a patch, and the methadone and Ativan are taken orally. Having seen his last melt down, you can see that he is having some withdraw issues. Throwing up, shaky, high heart rate and totally inconsolable. It is hard to watch. But, they went back up on the Ativan and I think we may have to take the weaning process even slower then we are now. The reason they have to wean is so he doesn't build up an immunity to these drugs.
He is on very little feeds and the cultures of his diaper came back negative for any infection. The blood in his stool is probably due to the Heparin, and there's not too much concern. He had an X-ray of his belly again today, which came back fine and he also had a head ultrasound, which looked good as well. Neurologically he looks great. Moving his head left to right, focusing on things, moving his arms and legs...so all of that is good.
We had a really nice weekend with my family. Riley is so amazing, she brightens my day. We had so many laughs with my parents and sister...it's nice to get out a bit and into the world. But, you are never totally at peace. I can't wait for the day where we can feel somewhat relaxed.
I will make sure to post some good pictures tomorrow! Nolan has been so cranky, I didn't have the opportunity to capture any. I hope you all had a great holiday weekend! I guess it is now really time to get into the Christmas spirit!
ONE MORE DAY CLOSER!
#nhos
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Buffalo Wild Wings Fundraiser Dec 4
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