Checking In

I’ve been waiting for the right words to come to me so I could properly depict all of the feelings going on inside of my heart. But they aren’t coming. It’s been 73 days since Nicks been back home and I still feel speechless over what has transpired over these past 14 months. And while these words dont come close to translating how it truly feels, all I can say is that I am simply overwhelmed at where we are today.

A Note From Nick

What a year it has been! It started with the words no one wants to hear and was followed by denials from multiple medical institutions, invasive cancer treatments, fighting to be listed for liver transplant and grasping on to hope along the way. Next came a life saving liver transplant, major complications that put me in the ICU for weeks, recovering in New York City during the Covid-19 pandemic and 3 months away from my kids. Today marks 1 month of being back home with my family and reflecting on an incredible journey I will never forget.

Home bound!

Just a quick update to let you all know that Nick is coming home TODAY! I’ll write more when time permits but in a nutshell I have been back with the kids for about two weeks. Nick had his 3 month scans on Friday and everything looks good and is healing very well. So many emotions and so much gratitude.

Update-8 Weeks Post Surgery

Hey you all…I hope this note finds you safe and healthy.  Just thought I would drop you a few lines to let you know how Nicks been doing.

We are having a pretty darn difficult time grasping that he is almost 8 weeks post transplant.  This time has flown and drug all at the same time.  Nick continues to improve by the day.  He tends to have bloodwork on Mondays and e-visits with his team on Wednesdays.  There has been a ton of blood level observation and medication tweaking….it’s really amazing to watch how all of this works. It’s such a science, yet such an art all in one, if that makes any sense at all.

Bloodwork/Update

Nicks bloodwork from yesterday came back. His liver labs are all continuing to trend in the right direction. His body seems to be absorbing his anti rejection meds much more efficiently now, too, so they can knock the dosing of those down a bit. All really wonderful news. He will have labs next week and we will continue reevaluating as we go. He’s feeling well, seems to be improving by the day and his incision is healing beautifully. He’s been doing an awesome job of staying on top of his meds and blood pressure. All so positive.

So many of you have asked what’s keeping us out here..and I’m realizing I’ve never really explained to you the deal…

A Note For The Caregivers

Disclaimer: I, in absolutely no way, want to lose sight of the true hero here, my husband and the patients that fight so tirelessly day in and day out. The strength and healing comes from them, both physically and mentally. What I hope to achieve through this post is awareness for all of those that might be fighting along side those fearless patients and struggling or feeling discouraged. It is our job as their family and friends to do our part in supporting them emotionally, even in just the most simple and basic ways. I am so incredibly grateful to be one that is supported so very well, and to have experienced first hand how impactful this support can be.

I’ve done my very best these last 11 months. I’ve had to process the possibility of losing my partner, my love. I’ve had to come up with a plan of what parenting alone for the rest of my life might look like. I’ve gone over in my head how I might have to explain to my kids that they’ve lost their father; what that unimaginable scene might entail.

First Post-Op Apt

Nicks appointments went well today.  He had bloodwork, we met with someone from the liver team and also saw a cardiologist.  He checked out well in the liver department.  No big concerns…no fluid retention…his incision is healing nicely..they even took his staples out..and I can tell you that was not fun to watch; he’s literally the most brave human I know.  The appointment with the cardiologist went well, too.  We were assured that while Nicks aortic dissection will need to be followed from here on out with check-ups, it is not of urgent concern right now. And hopefully keeping his blood pressure below normal will help keep any complications at bay.  He will have repeat scans in June either at the U of M or here, depending on where we are when that time comes.  But for now, we just need to continue monitoring his blood pressure at home three times a day.  Great news.

Discharge!

We are going home to our teeny little NYC apartment today and we couldn’t be more excited! Nicks scans came back stable and his bloodwork has improved over the last two days too. His drains are all removed and all he has left is two IVs in his arm which they will remove before we leave.

3.10 Update

Hello all….just checking in. Not going to bombard you with every detail that’s gone on over the last few days because, truthfully, so many things have come and gone. Will just give you the quick lowdown on where Nick is now..

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..