This is the transplant story continued.
One of the things I remember vividly after they took him back to the operating room was shortly after I heard ambulance sirens arriving at the hospital. There is no emergency room at this hospital and furthermore I heard it approaching the basement entry way… I kind of realized then that oh wow, they are probably bringing the liver. It was a local donor, so the liver was “on ice” as they say for a very short amount of time which is really an awesome thing.
I was alone at first, just downstairs in the basement surgical waiting area. Since it was the middle of the night there was really no one else around at all. I went into the consultation room and laid down on the couch. My mom, her husband, and my brother were en route.
The first time the nurse called me was about an hour after they took him back.. she told me that he was fully hooked up to everything and under sedation and they would be starting the incision shortly. Then she called me again to let me know that he being opened up and that things were still going well.
A little bit later another phone call…. the old liver was out and the new one was in, partially hooked up and with good blood flow going through it. Finally came the last call that they were closing the incision, he was doing great and a surgeon would be out to talk to me when they were finished.
My family arrived around this time. The whole entire thing had only taken 5 hours, the actual surgery part of it only 4. It all went extremely quick. I paced the floors waiting for my family to arrive and the hospital started to wake up a bit. A woman saw me and asked if I was okay… I told her yeah I was just waiting for my family and my husband was undergoing a liver transplant. She was like “oh honey they will find you, go rest.”
And they did. I never saw people more eager to lend me a dollar when I told them I was hungry and wanted a rice krispie treat from the vending machine lol We didn’t have to wait too long until a surgeon came back… he was brief and said everything went well minus some low blood pressure and Ki having low sodium when he came in and that we could go upstairs and wait in the transplant wing waiting room and someone would let us know when they had brought him up and got him in a room.
So we went upstairs and waited. I don’t remember much now about waiting. Just eventually that they came and told us that I could see him, but I could only bring on person at a time with me to the TICU. My brother came back with me first.
I was really nervous to see him after transplant. I had read plenty of things but didn’t truly know what to expect. At first the sight of him with the breathing tube in was a bit hard to take. It was the first reality check of oh wow, this really happened.
He was still fully out of it but I was glad to see that he was sleeping peacefully. My brother and I sat there and just sort of stared at him for a while. My brother would offer up encouraging words. His nurse would come in and explain some things, leave, come back, leave come back. About every 5-10 minutes they were in and out of the room and this is how it remained pretty much the entire time he was in TICU, which was about 3 days.
My mom eventually came back and at one point she sent her husband as well which was a bit awkward when it was just me and him in the room. And then again my brother came back, then my mom.
He started to rouse a bit a few hours later and panic a bit. His hands were restrained so he couldn’t pull the breathing tube out. The nurses would calm him and he would go back to sleep. As I suspected, he remembers absolutely none of it but when you are the one there watching it you worry that they are suffering and you want to do something to alleviate it but there is nothing you can do.
A couple hours passed and an ultrasound tech came in and said she was going to do an ultrasound on the new liver. I thought it would be like all the ones he’s had in the past, like 15 minutes tops but this one probably took close to an hour as she was creating a complete picture of the liver and all it’s connections. I asked her before she left if she could tell me what she saw but she told me she couldn’t. The nurse came in and asked her how it was and she got a bit snotty and said “we’ll discuss it outside” so of course at that point I was thinking “oh shit.”
They had told me it was extremely common to have to go back to the OR and the nurse told me to absolutely not freak out if that needed to be done, it happened more often than not.
I didn’t really know what was going on but the tech came back in with a doctor and he was telling her “show me” so she pulled out the ultrasound she just did and put it up on the screen and started pointing to things. She was like “i can hear it but I just can’t see it”.. and the doctor was pointing saying well I’m pretty sure it’s behind this and she was like “I know but I can’t get a picture of it so I don’t know.” He seemed pretty convinced, she wasn’t and at this point I was getting pissed because all this was going on in the room in front of me and nobody was bothering to tell me what was going on.
That ultrasound tech left and the nurse and doctor told me that basically the hepatic artery was not very visible on the ultrasound. They could hear the blood whooshing through it but they couldn’t see it. The doctor told me that this was most likely due to the portal vein being enlarged by the TIPS he had pretransplant which was of course removed with the old liver. More than likely the the portal vein was just obscuring the hepatic artery and everything was just fine but they might have to take him back down to the OR just be sure everything was functioning fine. For this reason they don’t close the abdominal wall immediately post transplant.
While we were waiting for them to decide he was coming too more and more and they started talking about taking him off the vent if he didn’t need to go back the OR. They put the vent on CPAP eventually and he was breathing on his own. He was beginning to respond to my voice, his eyebrows were the first thing to move, he would raise them when I talked to him and then eventually he did wake up enough that they asked him if I was his wife and he shook his head yes.
Another ultrasound tech came up. The nurse told me she decided to call in one for a second opinion and I heard whispers between the doctor and nurses that they just did not like the tech who did his first ultrasound. Apparently she was new and was a bit arrogant about her interpretation of what she was seeing and liked to argue a bit with the doctors about her opinion vs what they thought. So another long ultrasound took place and the new tech and doctor concluded that yes, it was probably just the portal vein blocking the artery but just to be sure they were going to take him back down, better to be safe than sorry and I happily agreed that since they were being proactive instead of taking a wait and see approach.
So they took him back down to the OR. They brought him back up about an hour or later and a surgeon popped to say that it was in fact exactly what they thought and his new liver looked “gorgeous” in there.
After that it was the same thing again, waiting for him to sort of come to a bit. My family eventually left and then it was just me and him and the constant flow of nurses. As he started to come to more he started motioning for something with his hand. It took me a few times but I finally figured out that he was asking for something to write with. They got him something but he was too far gone still on all the drugs to do anything with it.
As Saturday came to a close the nurses brought me a pillow and blanket for the recliner and I laid down and tried to rest. I just remember my whole entire body shaking profusely. The last 36+ hours and the fact that they contained no sleep caught up with me and for a minute I was really scared because it was so intense. It went on for about 20 minutes before I decided to chew up a dramamine and then very slowly I started to calm down and drift off a little. Of course it never lasted too long before something woke me but at that point even a few hours of sleep seemed like a glorious feat.
This is the point where the days sort of start to run together for me. Everything just seemed like a stream of things happening. That night he awoke a few times and was able to try to write things down on paper. He also developed a fever, which they told us was completely normal, it was all the inflammation from the surgery as well as the immune system responding to the new liver because immunosuppressants are not started right away so he was under a cooling blanket for a couple of days actually.
He came around pretty fast though. I guess it was the next morning he was angrily scribbling “tube out” on the paper as well as complaining about being thirsty. Eventually the vent did come out later on that day after he proved he could breathe on his own, something he failed in the early morning hours because he had complained of some pain so they allowed him to have some pain medication and that suppressed his ability to breathe on his own a bit. But by Sunday afternoon it was out. It was a bit of a difficult thing to see, I had to look away a bit as they were pulling it out but it was such a relief to see him without it and he was able to whisper some things to me. I had never been so happy to hear his voice.
He asked for his phone to check his stuff even though he was still completely out of it lol I’m not sure he even knew what he was doing but there he was scrolling on his phone for a bit before dozing off. That evening I turned on some football… his Packers were playing. I remember asking him if he would like to fall asleep listening to his Packers play and he opened his eyes for a moment, nodded yes, looked very content and fell back asleep lol He was then awake later on again that evening for a few hours even while I slept on the recliner.
We also learned that his sodium at been 121 at time of transplant. Basically had we not been there that weekend for a transplant we would have been back there to have him hospitalized for low sodium. A few more points and it probably would have been too low to safely transplant him. We were really really lucky.
I believe that 2nd night is when they began the immune suppression as well. First came some heavy duty IV drugs that basically ‘reset’ his immune system so to speak and then they added in the suppression drugs.
The next day they took him back to the OR to close up the muscle wall. He had to be intubated again but thankfully this time they were able to remove it prior to him leaving recovery so we didn’t have to go through it all again in the TICU. They also warned with the muscle wall closed this was when the pain would really start. That morning the nurses had moved him around a bit to prevent skin ulcers and what not and hearing him cry out made me feel like I was going to vomit… I felt like I could feel how bad it was hurting him. They also initially thought on this day that he would have to be on temporary dialysis because his kidneys were struggling post surgery but thankfully this did not happen.
That day I also felt myself age 20 years in 5 minutes because while I was downstairs getting something to eat I was on the phone with my mom and I heard something over the loudspeaker about the transplant floor. I initially ignored it and then I heard it again so I paid more attention… someone had coded on the transplant floor. I tried to be calm but hurried and got off the phone with my mom and rushed up to the TICU. When I got up there all the doctors and nurses were rushing in the general direction of Ki’s room. I thought I was going to die in that moment… I can only imagine how terrified I looked. When I got to his room the person in there was racing out and he was perfectly fine… it was a patient down the hall, and they were moving her into the room next to his, she had stopped breathing but they got her back. She had a ton of scary things happening with her but before we left the TICU I saw her up walking around.
I think that evening or the next I drove home to collect some things and then turned around and drove right back… they moved him out of the ICU to the transplant unit rooms and things were going so well… the nurses kept raving about how well he was doing and he was finally starting to become more alert about everything and hold conversations, not fall asleep as much, etc.
Part III later…
this is the nonsensical mass that is my life. welcome. 