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. Continue reading

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… Continue reading

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. Continue reading

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.

I had a flight booked for tomorrow to go home to be with the kids; Nicks incredibly kind friend was planning to come stay with him while I went back-I just don’t have the words for this mans selflessness and willingness.  But we decided after talking with his health care team that it probably isn’t in the cards for me anymore with all of the viral stuff that is going on…for many reasons. Truthfully, my heart has never ached so much in my life.  I allowed myself to go down a really dark hole.  I buried  my head in a pillow and sobbed for what felt like most of the afternoon.  Why do the roadblocks keep piling on?  My kids don’t deserve an ounce of this; they need their mommy.  How can I possibly lean on others to get them through all of this e-learning and change with school being out?  But mostly, how am I going to have the heart to tell them that now I can’t come home tomorrow?  Will I lose their trust?  Will they give up on all of this?  My mind went in a million different directions.  But then, a silver lining presented itself late this afternoon: Continue reading

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.

Its an incredibly emotional day around here. While we can not wait to finally take the next step in Nicks healing, we have developed relationships here at the hospital over these last three weeks that have impacted us in a way I can’t describe. These are the people that have shared in some of the worst days of our lives yet the hope and drive they had for Nick through it all was palpable. The people who fought along side him to get to the bottom of every single obstacle. The ones that rushed, calmed, listened and advocated. And the ones that checked in with us about our kids and showed true empathy and understanding of not just what Nick was going thru physically, but how our family was doing emotionally. Its been such a trying time and we’ve been away from home and security, yet I’m not sure we’ve ever felt so supported. It’s truly amazing how total strangers can so quickly become your family. I’ll never be able to translate to you just all that’s happened along side these people, but our hearts are forever changed. Continue reading

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🙏🏽🧡