It’s 10:47 PM and I’ve been awake for 20 hours. I’m sitting here, in a hotel room hallway, a little numb and crestfallen. The living liver transplant that was scheduled for tomorrow morning has been postponed…or cancelled until further notice.
I feel the need to get this info out there before the morning, before I start seeing Facebook messages about how people are praying for our surgery and a few key friends start asking why they haven’t heard from my husband. So I’m writing this before I try to sleep, so that I actually can sleep knowing you all will read this in the morning and I won’t have to wake up and deal with it then.
A snapshot of today.
My family had to fly from Portland to San Francisco via Las Vegas (thanks, eclipse chasers). We got to the hotel around noon and went to visit my cousin at 2 PM. He was not in good shape. Doctors were saying they wanted to do the transplant ASAP…but were also very concerned about his condition.
At 3 PM I checked-in at hospital admissions and waited for a room assignment. At 4:45 PM I was in a shared room on 9 Long, in hospital robes and visiting with my cousin’s family. I got stuck in the arm 3 times; one failed blood draw, one successful, and one failed IV port. Having not eaten solid food in a couple days, I asked for some chicken broth and apple juice (clear liquid restriction) for a pick-me-up.
Around 5:30 or 6 PM, Dr. Ascher came to visit me. She said they were still unsure if they were going to proceed with the transplant in the morning. Dr. Roberts had told her that he would decide in the morning. Her opinion was to cancel it. That was difficult to hear, as my cousin’s mom was in the room with me at the time, but I didn’t believe it was a real possibility.
Around 8:30 PM I was in Randy’s room, visiting with his mom and partner while Randy lay in a restless, drug-induced sleep. A surgical intern came in and gave us the bad news. The transplant was not happening in the morning. She said I could stay the night at the hospital or go to my family’s hotel room – but that was up to me. Then a pulmonary specialist came in and explained things a bit further.
We were deflated. Angry. Confused. How would Randy take this news? He hadn’t heard any of it and we’d have to tell him.
It wasn’t long after that when Randy actually woke up and, for the first time in a few days, was talking and joking with us and alert. We told him the news as we tried to wrap our heads around it and calm our hearts.
My cousin is retaining a lot of fluid, some in his lungs, and the doctors are concerned about a possible infection. If we were to move forward with the transplant, he’d be given immunosuppressants, which would then allow any potential infection to kill him. Until they “fix” his fluid situation, they cannot move forward with the transplant.
The good news?
UCSF is going to keep him there until they can get him back into a “good place” and resolve his fluid issue. This is a much better alternative than going back to his regular hospital which cannot give him the same expert care.
So what now?
Tomorrow we will know more when the experts meet to discuss his situation and make a plan. One possible date for the rescheduled transplant is September 15th.
J and I are planning on staying here until Friday at least. I will have to redo some blood tests at UCSF anyway for a postponed transplant. As August 24th was supposed to be a special day for Randy, I’m going to spend the day visiting with him and hopefully make it special in some other way. I will still give him some gifts I had prepared for him and maybe bring in some balloons or…I don’t know yet.
But then we’ll have to get flights home. We’ll have to start back at square one and make plans and prepare for another trip down, hopefully no later than next month. Flights, hotels, Moxie-sitter, time off work for J and my mom, etc.
Just being honest….
We have been so blessed and encouraged by all the support we’ve gotten. Which makes it that much more punishing to have to share with all of you that this isn’t happening. At least not right now. I’m so frustrated and feel somehow false to all of those who have been pulling for us for August 24th to be THE day. I am dreading going home. I’m worried I’ll resent this time that should have been Randy’s new start and will now instead be his prolonged pain.
And yet, at the same time I do know that all hope is not lost. That God is STILL in control and working through this situation. That an opportunity for my cousin to receive better care and a better hospital for a few weeks could very easily result in a better transplant outcome.
So that’s where we’re at and that’s all I can say about it for now. PLEASE KNOW I appreciate all your messages but I may not respond for a day or two.
Now more than ever…
Pray for us. We’re doing our best to accept this and keep hope but all of us have some grieving to do in order to move forward.
We need your support. This ends up being an extra, unforeseen, and expensive 3 days for our families. It depletes our resources for the actual transplant still to come. And it is STILL TO COME!
There is the GoFundMe. If many people give a little (like $15), then it will make a huge difference.
And there is the T-shirt fundraiser.