Hello from Pittsburgh! We made it into town last night in the wintery weather. My parents, myself and Fred and Janice Springman all came for the weekend. Last night we spent some time with Nolan and then went out for a late dinner. I was happy to get Matt out of here. From the sounds of it, his week was a lot worse than what he told me (which is the norm, he doesn't like to upset me while I am away). Nolan's agitation through the week was pretty horrible. The worst that anyone has seen to date. On top of that, he did test positive for the rhino-virus (cold), so he is congested, which adds to any irritation. Not that the 8th floor is a bad place, but with how bad his agitation was, I am so thankful they sent us back to the CICU. They are currently trying to get him back to a comfortable state, and it is clear that things are getting better. I came over to his room early this morning, and even from last night he is way more consolable.
SO, here is the latest from what I gather after being here for almost a day. Nolan is currently receiving Precedex through his IV. This will probably be weaned by the end of the weekend. Orally he is receiving clonidine, Ativan, methadone and every once in awhile morphine. They are using the morphine as a bridge while they increase
his methadone. He is also receiving around the clock Tylenol. Dr. Feingold, one of the transplant doctors, stopped by to give me the play by play of the past week. He said, aside from the HORRIBLE agitation, that he is encouraged because they have done every test possible and nothing bad is showing up, which tells them that this is probably all sedation issues. In the beginning of the week he was not sure if they would have accepted a heart for him due to his cold. He said now that if a heart came today, they would definitely take it. Our nurse has set it up that he is receiving some sort of sedative every two hours so Nolan has some sort of relief. Nolan is currently receiving TPN and lipids through his feeding tube. Today they are going to start back on some formula feeds.
I believe medically that is the latest. His VAD still looks great, he is fully anticoagulated and we are just praying that we get that call soon. Physically Nolan looks pretty worn. He really did not sleep all week, so I am assuming he will probably sleep most of the weekend. His heart rate is pretty high, but I assume once they get the sedation leveled out his heart rate will follow the same trend. I THINK we are on a good course. From what I was told (and can see) Nolan would rub his hands almost raw and he has scratches all over. This is from thrashing about while going through the withdraw. There are some amazing nurses and physicians here in the CICU that have Nolan on a good plan to get him happy again. Everyone wants to see that Nolan smile!
I plan to spend my day and most of the evening with Nolan. I made Matt sleep in and now his is hanging over at the Ronald McDonald house doing school work and, I hope, some relaxing. He is also pretty worn from the week. I just want to hug him because I can tell how upset he is from the past week. I pray that this week is better for Nolan AND Matt. I tried to make Matt go home this coming week, but he insists on staying. I think it's a father/son thing. I get it. I am just happy Matt and I have the ability to switch weeks so we both can help Nolan and spend time with our Riley Roo! Being with Riley really helps mentally. She has no idea how much she is helping us through all of this! Just looking at her always makes me feel better.
Tonight, if the day goes well, we plan on going out to a nice dinner with my parents, Fred and Janice. I am already antsy about leaving Nolan tomorrow. Having our family separated is starting pain me more and more. Matt and I were just saying last night how excited we are for the summer because we know by then we will all be home. BUT, I need to remember to live and focus on TODAY. And so far, we are having a good one.
I hope everyone has a great weekend! Keep sending the positive vibes and prayers. And let's hope we get that phone call SOON!
ONE MORE DAY CLOSER!
#nhos
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