3.4 Update

Thank you all so much for your prayers and love..it’s truly such a big part of Nicks healing. Here’s the latest..

Nick had repeat scans yesterday and they showed that the dissection in his aorta has remained stable; we are so grateful. There is possibility that they may need to intervene on this down the road, but for now they are hoping to keep things at bay and stable with tight blood pressure control. Everyone is very perplexed by Nicks aneurysm history and there’s some concern there genetically, but right now they will watch things closely to make sure things are kept at bay and Nick will have genetic testing likely after discharge. While all of this is scary, we just have to stay present and trust. We won’t let this worry get in the way of how much Nick and his teams have accomplished this far. Continue reading

Post Transplant-Day 2

What a whirlwind these last few days have been. Nicks surgery went well. It was intense…back there for 12 hours…and they finally finished up in the early hours of Sunday. A lot of sorting of his anatomy but they did it. And they did it well.

Nick was progressing incredibly well on his official day 1 post surgery, yesterday. He was off of his breathing tubes quickly, very alert and even got up to walk. Unreal. He was exhausted but his pain was managed well. He even graduated out of the SICU and moved down to the transplant floor where they will care for him for the remainder of our stay.

Early this morning came some major complications. Nick had severe internal bleeding that gave everyone quite the scare. They rushed him back up to SICU and immediately intubated and scoped him to find where the bleeding was coming from and they uncovered a small tear in the lining of his stomach, likely caused from the cardiac scope they had in him during his surgery. They quickly “stapled” this area back to good through the scope and were able to stop the bleeding before it was too late. The fact that these teams were able to take care of this in the manner and timing that they did is not lost on us. Based on what we’ve been told by the staff here, this situation could have had a very different ending, and I can not tell you how grateful we are right now. Continue reading

Surgery Complete

They finished nick last night around 2am..it was a very long and complicated surgery but they did what they set out to do. He is in the icu now and they just took his breathing tubes out and he’s breathing on his own. He’s pretty out of it but is awake…just very exhausted and in a lot of pain. Overall he’s doing well and as they’d hope thus far🙏🏽🧡

It’s here!

We got the call at 4:45am this morning and Nick went back into transplant just a bit ago. I have so much going on in my head and heart, but the words just aren’t following. I will be sure to keep you updated, but if you have a few extra prayers or positive thoughts to spare we will take them. Nick went back there radiating strength, grace and confidence, per usual, and I couldn’t be more proud and full of hope..bless his beautiful, brave heart. Be in touch…much love xoxo

Officially Listed

Hello all…Hope this note finds you well and coming off of a wonderful Valentine’s Day. Thought I’d share what we know as of now with regard to Nick..

Nick is officially on the transplant list! Can you even believe this?! We’ve been waiting for what feels like an eternity to get to this place…he did it. He has come so incredibly far.

Nick had his treatment procedure yesterday and all went well and as expected. His radiologist was successfully able to cover the remains of that “hot” tumor he treated in the last round and was also able to hit one more small one that hasn’t been a big concern/high on the radar, just for precaution. Now, we just wait and pray for a liver to present itself to us. If we haven’t gotten the call in a month or so we may need to go back in and rescan things/discuss another treatment to keep things at bay but as of right now his radiologist doesn’t see anything else he needs to or could treat at this point. Unbelievably positive news. Continue reading

What’s Ahead

Hello! I am going to make this as short and sweet as possible…we’ve been running on no sleep and man that in combination with a rollercoaster of emotions doesn’t make for the best brain function…so I’ll try and spare you:)

Nick has officially been approved by the board to be listed for a liver transplant! He’s checked all of the remaining boxes he needed for approval…his bone and ct scans have both come back showing that the cancer has stayed localized to the liver (and my gracious was that news overwhelmingly beautiful to hear)…and they have successfully treated his tumors to a place where he is considered safe for transplant..his last afp draw was at 336. How absolutely positively incredible. There are a few administrative kinks that need to be worked out and then he will officially be on the list..hopefully in a week or two.

I know what you’re thinking. What’s the timeline here? When will we know when his transplant is? How long will it take for Nick to get a liver? And man wouldn’t I love to be able to answer those questions for you. Really, we are approaching this next step just the same as the last nine months..one day at a time. It could take a few weeks…it could take months. Here’s the tentative plan that could absolutely change at any given point: Continue reading