After the false starts we’d had with kidney calls early on, even after we knew this kidney was good, we still waited with cautious optimism. We’d heard stories of the surgeon calling everything off even after the patient was on the operating table. They need to put eyes on the kidney to make sure it’s good. With the first offer refused once Amanda was prepped and ready, then the double offer back to back where both got refused, we were counting this call as the third, and hopefully the last.
The surgery seemed to go quickly. I got a call from the surgeon with a rundown. Everything went really well. The new kidney was making urine almost immediately. The recovery nurse called a while after, not to tell me to come back, but to say she was in a lot of pain. That is typical after surgeries for Amanda; she had a crazy high pain med tolerance. I think most PACUs now keep you out while the patient is in a lot of pain. Though for us, instead of them trying a bunch of different pain meds, if I am there, I can just tell them which one to go to first off. Since I hadn’t seen Amanda yet, I was ready to bust through the PACU doors!
I did finally get to see her after a while. Her pain was getting more manageable. As a catch-22, that makes her pretty sleepy. The anesthesia usually has a delayed effect, catching up later, too. They already had a step-down room; it just had to be cleaned. I didn’t get to stay in recovery long with her because they wanted me to be out while they transferred her to the step-down room. This PACU experience was an easy one, nothing like after a big heart surgery. I didn’t need a cry break after this one! There is a bathroom leaving the CCICU in the Houston hospital where, numerous times, I held it together until I got to that bathroom, then bawled my eyes out once in there. I can see that hallway, clear as can be in my mind. Guess there is a little PTSD from that! I’ll be honest, I was so glad Amanda didn’t need to go to the ICU this time. The 60 days we spent there were hell. I can clearly picture every inch of that room and the hallway outside it. We really have had a hell of a ride in our medical journey.
I waited a while to get the text to go to Amanda’s room. I was catching up on my daily bible reading plan. I was listening to the daily scripture podcast. I sent Tim a screenshot, telling him I was catching up, because I couldn’t have listened to him read while I was driving. He has a soothing voice, and I’d have been put right to sleep on my long drive up! I also got a new book; it’s a tiny thing with a leather cover and quality Bible paper. A book on praying scripture. It had just come in the mail and was new, so I was thumbing through it. There are a 30-day plan and a weekly plan—just scriptures, but organized in prayer form. I really like it and had gotten it for Amanda and me to have joint custody of, since it had a green cowhide cover that matched her growing collection of green Bibles.
As I read the Wednesday prayer of the weekly plan, I just became overwhelmed and began to tear up. I felt like a rookie surgical waiting-room family member! I can spot the overly anxious and emotional ones easily; I sat next to a few yesterday. My mom was always like that, so I had to ban her from sitting with me early on! I don’t know what it was; these scriptures just hit me right in the feels. I’ll share a few of the sections from yesterday:
Eventually Amanda called me. They had all of her stuff in a storage room and had gotten it out and to her. I thought when I saw her picture pop up on my phone that it was odd she’d been there long enough to get her phone, but they hadn’t texted me to come up yet. She wanted to know where I was. I told her, “In the waiting room since they hadn’t called me yet.” She said, “Well, I’m calling you now!” in a weak but stern voice! She was ready for me to come up and ornery about it. She had asked them multiple times to call me, but they never did. Whiny isn’t good, but ornery was a good sign with her.
They needed an IV after a few misses, so the big dawg NP with an ultrasound stepped up to the plate while I ran to get dinner: Panera broccoli cheddar soup for Amanda, her after-surgery lunch go-to, and some cafeteria Chinese for me. When I came back, by the look on Amanda’s face, I could see he wasn’t such a big dawg IV guy after all. Seems he’d had a miss or something.
The heart team stopped by. It was Dr Saks, the doctor we did our original evaluation with and who moonlights as a folk singer-songwriter. A fellow who’d been on Amanda’s case a lot in both the CVICU and step-down accompanied her. She was genially happy for Amanda and to see me as well; I’d missed her at a couple of clinic follow-ups. It was good to see familiar faces. They will follow from a distance and not round regularly. At the end of the day, they can flex on the kidney team if they need; heart trumps kidney!
The abdominal incision is new for us so that Amanda couldn’t find a comfortable position. Pain management was the big prayer after Amanda got settled in. The more they dose her, the sleepier she gets. Bev ended up coming by and stayed a while. Amanda was in and out napping. She was up for some of our chatting, then out again. Bev is a pro at the hospital visits, being a heart patient herself. So it didn’t phase her with Amanda’s in and out of consciousness!
In the early evening, I settled in deep to my chair, feet kicked back, and cap pulled over my eyes; just about the time I fell asleep, the infectious disease doc came in! He was called in about combining some antibiotics, but he didn’t approve of the team’s request. It seemed that none of the teams were talking with each other. That’s not uncommon in most hospitals we’ve been in. We always side with the heart team until proven wrong, though! Amanda had already been back and forth with the recovery nurse about some med changes!
They did start a dopamine drip. This is what they were using to help Amanda keep all the fluid off pre-heart transplant. A steady stream of that, with IV diuretics, was the only combination that could keep fluid retention at bay. When they would take her off of it, fluid overload in no time, 50 pounds added in a matter of days, wild times. It is for blood pressure this time, though. They need her BP up to keep the new kidney perfusing well. She was also started back on an oral BP med she was on post-transplant that the kidney surgeon wanted her off of pre-kidney transplant.
As I walked the halls last night going to get food, I noticed many familiar faces. Not any I knew from our care besides Amanda’s heart transplant surgeon; just familiar faces from the year of being here, almost half of that inpatient.
I had a big plan to get to bed early, but it didn’t work. I felt like a new man and got a second wind after a shower and getting out of the clothes I’d had on for 36 hours! I finally crashed, and a few hours later I was abruptly woken up by a phone call. The nurse was in the room and commented on my ringtone, which he thought was an alarm. Amanda explained it was work calling! It’s the Imperial March, Darth Vader’s theme. It’s to remind me where I stand with the railroad: I’m just a stormtrooper and will be replaced in an instant if I cease to exist! I couldn’t layoff, what railroaders call taking off work, with the auto caller, so I had to talk to someone to take a sick day; surprisingly, I have a couple left. I promptly fell right back asleep!
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