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.
As for Nicks liver, everything is looking really good. His bilirubin is lower than it’s been since his diagnosis and it’s continuing to trend in the right direction. His kidney function seems good too. He has one lab that is increasing a bit, but they aren’t concerned with that right now as it could be due to a number of things and they want to just wait and see before they decide to scope him. All in all, his labs and vitals are incredibly positive.
Nick got moved back down to the transplant floor last night and man are we hoping this will help with his sleep…he’s really struggling in that department and, as we all know, sleep is so important for his healing. It’s likely due to a number of things..the trauma over the last week, being in the SICU and also the medications so hopefully as his body continues to recover his sleep will, too. Otherwise he looks fantastic you guys…I’ve seen such a change in him physically over these last few days. He’s eating very well and his strength is improving by the day. He’s in good spirits and is enjoying his little hospital room view of the East River and feeling the sunshine through the window🧡
We’ve been told from the beginning that this is not going to be a gradual upward healing process. That there are going to be bumps and setbacks. And while you try so hard to mentally prepare yourself for those types of things, the ones Nick has faced are not “typical” and have been quite serious; things we could have never prepared ourselves for. As his surgeon said this morning..”it seems you’ve used all nine lives, so let’s take it easy from here on out”. We got a good laugh out of it..but truly, there’s a reality there that is big. We are just so grateful that Nick has come out of these scares on the other side and for the incredible work and connection of his care teams. We now feel like we can truly begin to focus on Nicks healing from his transplant, and that feels really good. Onward and upward 🧡
I miss the kids more than I knew was even possible…my heart legitimately aches for them, but they are doing great back home. I just couldn’t be more proud of them. I’m starting to come up with some plans to see them..so just the thought of getting that on the calendar is the biggest breath of fresh air; I can not wait to squish them! We are just so grateful for all of the love they are getting back home, whether it’s from caregivers, teachers or friends..it is the greatest gift we could possibly receive right now .
I’ll be sure to keep you updated as things change..but please know of our love we are sending your way! Xo