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…

From the get go they made sure we planned to be here for anywhere from 1-3 months, pending several factors. Because of the complexity of Nicks surgery and the complications during recovery in the hospital they want us to plan on three months, no if’s, ands or but’s. We also had several questions for them with regard to covid, etc, so i will just bullet point a few explanations below:

-Nick is at highest risk for complications these first 3-6 months post transplant. The reason this institutions program is so successful is because they keep their patients close; it’s been proven. They are able to detect and treat complications incredibly quickly thru doing bloodwork here…we go to the clinic and they can get results in minutes and act very quickly to treat Nick accordingly if there are red flags. If we went home, his bloodwork would be at the U of M. They would send it to the lab, wait for results and then send it out here to his team so they could evaluate and make a decision. This could take hours or even days…and those hours or days could be a matter of life or death for Nick. Complications need to be caught very quickly for success. Will it always be this way? No. Eventually we will be able to go home and do it thru the U, but until Nicks labs are more stable and we’ve given this the three months needed to lower several risk factors, they just have to keep him close.

-his surgeon is the only one that has seen the mechanics inside Nicks body. He says Nick had some of the most complex anatomy he’s seen, and he had to do a lot while he was in the OR to get things in order. Heaven forbid a serious complication arises, he is the only one that knows what things look like inside Nick, and what the best route to take in treatment might be. Nick being here, 6 blocks from the hospital and his surgeon, is detrimental in these early months.

-yes, the covid virus is INCREDIBLY serious and scary here in NYC. But the only way they feel Nick would be better off leaving here is if they ever shut the hospital system down…which no one forsees. The risk of Nick leaving here and being away from the hospital/his team outweighs the risk of him being in this covid-saturated city. They want us to stay in, be smart and wait it all out. Aside from quick walks outside and keeping a six foot distance from others when he does it, they don’t want Nick going into any other buildings but our own unless it’s for bloodwork. I am able to go out and get our essentials when needed. And trust me when I say I’ve got the sanitation process down for that…every single thing gets disinfected before it enters our apartment. We are being as careful as possible.

I’ve also had many of you ask me why I am not able to go home to be with the kids and Nick be out here. Our plan was for me to split my time between here and home during these first few months post transplant-we would have a few close friends and family come here to relieve me. But now, because of covid, they don’t want me going back and forth and exposing Nick. They are ok with me leaving one time..but they want whoever would come to be with Nick to be here for the rest of his time out here and we don’t have anyone to do that right now. We have had a couple offers from a few incredibly kind people, but these are people that have children and a family of their own and we would just never take someone away from their own family and put them at risk just to help ours..it’s not right. So, to answer many of your questions, no, there is no timeline in sight..we just have to wait this viral stuff out and see what happens. We are just praying so hard for something, anything, to change. Somethings got to give.

My favorite thing about this city is the energy and connections covering it like a blanket. Step outside of the touristy areas and inside the true neighborhoods and no matter where you turn, which way you look, you see people talking with one another, taking genuine interest, digging in. Connecting. All it takes is a simple hello and the next thing you know that stranger you’re talking to suddenly knows more about you than your own blood. It’s like nowhere else I’ve ever been in that respect. People here are the most real and raw, and they genuinely care about one another. But that beautiful, life-filled energy of NYC is gone right now. It is just so sad to see the desolate buildings, the silence and distance between people, and the eery, nearly empty sidewalks and streets. The good news is that this city has incredible leaders, healthcare systems and grit. I just pray that these three things are enough to combat this virus quickly.

We hope you are all staying healthy and safe as we know this is all greatly impacting you, too. There’s so much uncertainty and fear going on out there…it’s truly just so sad. You will continue to be in my prayers and heart..sending you all hugs xoxo

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.

I’ve forgone my social life and and pretty much every ounce of self care. I’ve asked for my kids patience. I’ve asked for others help when it’s felt incredibly uncomfortable. I’ve facilitated space for him when he was recovering or not feeling well. I’ve tried to keep everyone together emotionally; telling my kids daddy’s getting better. Assuring friends and family that all is going to be ok. Reminding him that we’ve got this.

I’ve missed more holidays with my children this past year than I’ve been with them for. I’ve prayed with them for healing for their daddy. I’ve tried to explain to them why this is happening to our family. I’ve tried to give them as much normal as humanly possible. I’ve balanced being honest yet protective. I’ve spent every waking second worried to the core about them.

I’ve made sure he is eating the right things. I’ve reduced every risk factor in our home and life imaginable. I’ve pushed him to do what makes him happy and whole.

I’ve seen my husband surrounded by healthcare professionals who were panicked and calling codes, fighting for his life. I’ve been told by doctors “this doesn’t look good, I am very concerned”. I’ve faced real, raw fear. I’ve seen his blood splattered on his care teams garments. I’ve waited for him to wake up. Waited for scans. I’ve been the optimistic one. I’ve encouraged. I’ve seen the bright side because I’ve had to.

I’ve trekked around a foreign city trying to find a place to stay. Signed and declined lease agreements. Gone to sleep realizing I hadn’t eaten yet that day. I’ve cried in total strangers arms, because of my exhaustion in combination with their compassion. Humanity is so good.

I’ve learned how to operate IV pumps and drain fluids from the body. Test blood sugars. And blood pressure. I’ve learned the difference between intubation and ventilation. I’ve researched and read and translated information. I’ve advocated. I’ve got every sign and symptom of a complication memorized in the back of my head, constantly evaluating his state.

I’ve been a food deliverer, errand runner and 24 hour a day walking sanitizer. I’ve slept on hospital benches in waiting rooms. Gone more days than you’d like to know without a shower or clean clothes. I’ve prayed in empty churches asking for strength. I’ve lit candles. Pleaded.

Waiting to go home, in the middle of all of this uncertainty in the world. Watching from all these miles away. Watching the others who get to hug my kids when they are sad. Watching those that get to help them navigate their school work. Explain to them what is happening in our world. Watching them tuck them in at night and tell them good morning first thing.

I see the sacrifice and work of those helping at home and how badly I just wish I could do it myself. The guilt. The burnout of others I worry about. The ache in my heart when the kids ask when I am coming home.

There is a lot I’ve had to give up over this last year. And I’ve been able to replace that with faith. But what 6 traumatic weeks away, no help out here and no sight of the end has done to my heart can not be replaced. I am different.

I’ve lost every ounce of control I’ve ever had. Stripped of it, slowly, over this past year. And now, there is not one single decision left that I get to make, not even when it comes to my own children. The only choice I get to make is to choose hope or not. And quite frankly, I have to consciously do this each and every day.

I want zero pity with this. I want not even the slightest, because I am the one that is going to benefit from all of this when it’s over, I know that. I will be stronger and fearless; harder, in a way that was probably necessary. We are going to get Nick fully healed and go home to our beautiful children; that is an incredible gift.

What I want is for you to understand that I am just one among millions of people caregiving each and every day. While we sit here in our comfortable homes making everyday choices, someone is out there struggling and has lost all control. They are weary. Run down to the bone. And scared.

I’m one of the lucky ones. I have a husband who tells me my value. I have friends who check in on me and spoil me with so much love. I have family who are willing to help in any way needed. A community that encourages me. Some do not. Some are completely alone. Some never get a single hug or a shoulder to cry on. Some have never even been thanked or asked how they are doing.

What I want is for you to pick up your phone and call or text a caregiver that you know, no matter their age, gender or background, no matter their story. Tell them that you are sorry for the cross they are bearing. Tell them that although you may never understand the depth of what they are going through, you know its not even close to easy. Tell them you can’t imagine the mental exhaustion.

Ask them if they are ok, even if you know they are not. Ask them if they can tell you what’s the hardest right now; I promise, they will open up. Tell them that you think they are really strong and that they have inspired you. Find an emotional way to help them, not just a logistical one. Even just text them a heart, so they can feel yours lifting some of the heaviness off of theirs. It will mean more to them than you know, and it will make you feel so good inside.

Here is my note to each one of you caregivers, from the bottom of my empathetic heart:

I think and pray for you daily. I find strength through you to get through my days, knowing I’m not alone and that others have done much more difficult things with much less positive outcomes. I hope you feel honored by others around you in some way, even if it’s just the simplest thank you. You are not overlooked. You are necessary, and so important. I see you hiding behind that patient, and I think you are so very amazing 🧡

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:

Nick got his bloodwork results back.  His levels are incredibly stable; they can even knock down his anti rejection medications a bit.  His bilirubin is 0.6.  Yes, 0.6.  His AFP?  Are you ready for this?  2.5.  His AFP is 2.5.   January 1st it was 1600. Today it is 2.5.  And then I stopped crying.  Perspective came back.  We went over his numbers and Nick and I looked at each other and didn’t say a word; we didn’t have to.  Our chests both puffed up a bit.  THIS is why we are here.  This is why we are sitting in this apartment away from our sweet, beautiful, resilient kids.  This is why we will keep at this and stay strong.  Because we will get to tell them that their Daddy’s cancer is gone.  We will get to tell them that all of their hard work and every ounce of their heartache and patience and understanding was worth it….because Daddy is better. No child should have to sacrifice what those three have.  But I will tell you, when this is all over, this victory will taste sweeter than anything they’ve ever experienced.  They will have a mom and dad home who have fought together and have found so much perspective.  Our hearts will be prepared to serve them in a way we never knew was possible.  We know that time will come.  And we pray that it’s sooner than later; but until then, we will try to stay focused on our purpose out here.

Nick is feeling pretty well.  He has tightness in his abdomen which can get pretty uncomfortable and is part of the healing process, but beyond that he has gotten back some energy and is eating well.  We are seeing improvement every day which is all we can ask for.  Being quarantined has been a challenge…but he tries to get out for a short walk a few times a day to break it up.

It just wouldn’t be right if I didn’t give my  sisters some proper recognition here.  They have all three been incredible… over the last three weeks each one has come to help take care of the kids; taking time away from their jobs and their amazing kids spring breaks.  My kids have had more Auntie/Cousin time than they could have hoped for and that has truly brought so much joy to them; I am just so thankful.  But I would not physically be breathing or standing without my sister Suzi.  She has taken complete ownership with my kids in a way I could only dream of.  And let me tell you, those kids of hers are right there with her bringing so much love and joy to G, J and R.  From organizing all of the childcare to arranging help when needed to taking on this whole e-learning initiative and everything in between. All while juggling her full time job and four kids of her own. She is my reasoning when my head needs it and my heart when mine can’t bear the weight alone. But most of all, she is safety and comfort for my kids and Im just not sure how I could make it through a single day without her.  Nick and I are both eternally grateful for her, for so many reasons.

My prayers are with each one of you as we face this incredibly trying time together.  My prayers for you are for continued health and peace in your hearts.  Soak up the time with your families and try to let the worry go. I know its so easy to get consumed and wrapped up in the fear, but try to keep the faith.  Because, truly, just as I was reminded today, there’s always a silver lining to come. xo

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.

We are currently just awaiting discharge instructions and another consultation with the pharmacist. We’ve certainly got so much to sort out and learn about what life is going to look like in these days and months ahead. Things are going to be very different, but my gosh we’ve made it this far and there’s no stopping now. Our apartment is very close to the hospital and we will be back Monday for his first checkup so that all brings comfort. Im so anxious for Nick to shower and just take it easy in our own space..and it shouldn’t surprise you to know that I simply can’t wait to feed him:)

I hope and pray that all of your health is well; this viral stuff is really something. We are trying not to worry about the huge risk with that, while also continuing to take all measures to stay healthy, especially for Nick. I really couldn’t think of a worse time to be away from our home and the kids…but we are trusting the process per usual. I am planning to see the kids next week and let me tell you, I physically don’t know if I can wait! Thinking about their strength and patience is so overwhelming and I just can not wait to give them every ounce of me.

Again, your kindness, notes and prayers are carrying us right along…we are so grateful to have you with us as we continue on🧡 Love to you xo

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..

His labs are looking pretty good overall and are staying stable/improving slightly over time which is good. His liver and kidneys are both functioning well and his hemoglobin is great which is so amazing considering how serious the bleed he had was. A few labs are showing that Nicks body is rejecting his new liver a bit which is common, but they have been tinkering with his meds and they seem to be getting him on track to where he needs to be.

He has a small lymphatic leak likely caused from the surgery so keeping him on a temporary low-fat diet should help heal that…we are already seeing improvement via the fluid he is draining, which is a great sign.

Nick will go down at some point today for a CAT scan to rule out any aneurysms above his chest as this area has not been scanned recently. This is not urgent and nothing is prompting them to do this, they just want to be overly cautious. So prayers that the scans come back favorable.

Nicks surgeon received the pathology of his old liver and my gosh what a wealth of knowledge it was. Nick had 13 tumors on his liver…unbelievable. And most of them were dead thanks to the incredible hands of his interventional radiologist which is VERY good news; it’s truly just remarkable. They believe the cause of Nicks original “kryptogenic” diagnosis 20+ years ago was actually autoimmune hepatitis. This really makes so much sense as we put so many pieces of the past together but we’ve decided it does no good to look back in frustration that this wasn’t seen by his doctors all those years ago. We are just beyond grateful to have this knowledge moving forward for Nicks future health.

Nick is feeling so much better these last two days. He’s in great spirits, is walking around, eating well and has even gotten outside a few times for fresh air. He’s having a little pain but they’ve ruled out that it’s related to anything serious….they are thinking it could be his drain..the poor guy has had it in for nearly 2 1/2 weeks but we are hoping he can get it out tomorrow or Thursday. His surgeon said today that Nick is probably in good enough shape to be released but they want to keep him here a few more days to stabilize his anti rejection meds and make sure the fluid he’s draining continues to lessen/show a downward trend with regard to his lymphatic leak before removing the drain. Nicks really anxious to get out of here but he’s completely good with doing what his team thinks is best.

We have so incredibly much to be thankful for right now and we are trying to keep that top of mind through the bobs and weaves. It’s been an overall good couple of days and we are praying that this trend continues. Nicks looks great and is feeling stronger each day and it’s just so beautiful to see.

Thank you so much for your continued prayers and support..we read every single message and feel every single prayer in our hope-filled hearts. Lots of love to you all! Xoxo

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.

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

Update

Just here with a quick status update on Nick..i hope this note finds you all well.

Nick made it back down to the transplant unit a few days ago and was doing fine…but we had to head back up to the SICU last night…i suppose third time is a charm.

To make a long story short, there is now a vascular surgeon involved….Nick has a dissected aorta. They are concerned because this could turn into an aneurysm. They want to monitor him very closely over these next few days just to make sure things are stable and looking ok…and they are keeping his BP low because this should decrease the risk. They will rescan him on Monday to re-evaluate.

From what we know now, this is a completely separate issue from his surgery/liver and is likely due to genetics but hopefully there will be more to come on all of that. This is probably going to have to be managed for the rest of his life through a vascular team, as his aneurysm history is concerning for a 40 year old.

My gosh, poor Nick. We finally got back down to the transplant floor and he worked so hard to get to a place where they could remove so many wires and lines…but now he’s back up in the SICU and they’ve had to poke and prod him all over again. He’s tired and the dissection has caused pain, but they are managing that. Most of his pain and discomfort is now coming from the drainage tubes he has in. He has been through so much.

If I told you this didn’t feel discouraging I’d be lying. There’s so many emotions going on but as we talked about it all last night I told Nick he was going to be just fine and he replied “we are warriors” and followed that up with his famous line “we have to walk through the shit to get to the strawberry patch”. Indeed, my dear, we will keep walking…I have hope in my heart that this turns out to be just a small setback.

We likely won’t have any big updates anytime soon, just a lot of monitoring, but i will keep you informed. Thank you for all of the strength you continue to provide for us…and please keep up the prayers 🧡