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

7 thoughts on “Bloodwork/Update

  1. Thank you for the update! You have such a gift. I donโ€™t know how you do it my friend! Thinking of you both !!

    Janet
    xoxo

  2. This is a very frightening time for all of us but especially for you and Nick. I can only imagine how difficult it is to be away from your children this long but sometimes we just have to do whatever is best. Your children are well cared for by loving people and they will be fine. In fact, they will be stronger because of what they have had to go through. It’s such a plus that we live with great technology so that even though you are not physically with them, they are able to see and hear you and Nick. Just being able to know and see that Daddy and Mommy are okay is a comfort to them because as you know, our imagination for things unseen is much greater and scarier than that what we see. Hang in there – stay healthy and stay focused on all the wonderful things that have allowed Nick to reach this point. Missy, you have been a beacon of strength for Nick and actually, for all of us, as you have kept us all informed on Nick’s journey for the past 11 months. Hang in there – hundreds of prayers surround you every day and we’re with you every step of the way. “That which does not break us, makes us stronger.”

    1. Thank you for the encouragement Emilie..you have been so supportive this past year, what a blessing. Sending you and Paul our love…we hope to see you soon ๐Ÿ™‚

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