Saturday, March 31, 2012

Things Start Looking Up

The first thing Jay said when he woke up was, "That was awful."

I agreed.

He went through all of the bizarre posturing and behaviors and explained why he had done what he had done. It was great at first, he explained, when he believed he was in control of everything, when he could make our kids appear out of thin air, and when he didn't need medicine because he had actually made up the whole thing about needing a liver transplant. But then it turned hellish when he couldn't get out of his delusion.

Wednesday turned out to be a day of recovery. There was lots of sleeping. Lots of Jay feeling the after-effects of not being careful about his wound and moving much more freely then he probably should have. Lots of the nurses changing his meds BACK from oral suspension to pill form. My awesome friend Molly came by the hospital and we went for coffee and a chat, and mostly managed to solve the ills of the world. Jason came by to make me leave for lunch, but I insisted on staying until rounds were over. During rounds we found that they wanted to keep Jay for at least another night for observation, and then Jason and I went to Taco Mamacita.

And had lunch with Taylor Swift. Sort of.

I wouldn't have even noticed if Jason hadn't pointed her out. I think that a Nashville point of pride is that we mostly leave celebrities alone, so I did. But I swore that if I saw Ben Folds I would be one of those obnoxious people who ask for a picture.

Tharon and Cecil from church came by on Wednesday afternoon while they were in town. And Wednesday night we rested, hoping that we would get to go home on Thursday morning. Oh, and I had a conversation with the psychiatric
nurse about whether I was OK with Jay starting an anti-psychotic drug. She convinced me, and I allowed it grudgingly. And we slept.

The Longest Day

When Jay "woke up," he was still completely manic. He wanted me to lay down with him, and what I did he'd start naming everything that he saw. He'd put his forehead against mine and say, "Foreheads together; foreheads apart." The liver team came in and Jay continued with the mania. He told them how he had taken Clare to New York and how they had "saw Jewish people and ate bagels," which just about sent us all over the edge in hysterics.

And I forgot...the previous night I had to take the clock off the wall because he was so focused on it. And I laid in bed wondering what on earth was going to happen to my family if Jay had to receive inpatient psychiatric care for the rest of his life.

The liver team said that they weren't going to do a liver biopsy because Jay's last set of labs showed that his WBC and liver enzymes had come back down. They said that they were probably looking at a reaction to medication and that it would resolve itself. I kept myself from saying, "When? Today? Next week? Next year?"

And then his behavior turned even more bizarre than before. He kept counting up and down from four on his fingers. He kept lifting up his right forefinger, holding it out in front of him, and then putting the tip of it in his mouth. He kept holding both hands out in front of him, bringing them together, placing them on his chest, and then holding them back out again.

And I couldn't do anything to stop it. He wouldn't take meds. He wouldn't eat. He wouldn't stop the bizarre movements. At one point he just kept looking to the left and not paying any attention to what was going on around him.

Both of our phones had died in the night, and my mother was going to bring over my computer and my phone charger. By the time I fired up my phone on Tuesday morning, my FB had blown up. I felt terrible for leaving people hanging, but so grateful for the response I had gotten. I sat in a chair in the corner of the room and ugly-cried for a long time. For so long, in fact, that the nurse came over to me told me that it was her job to take care of me as well as Jay, and made me promise to ask for what I needed. I told her that I needed to sit in the corner and cry like a baby and read the prayers and messages that everyone had left for me. With that over, I felt like I could actually function.

It was about that time that the doctor ordered 5mg of Haldol. Haldol is an old-school antipsychotic drug that acts like a sledgehammer. There's really nothing nuanced or fancy about it. It's just an absolute sledgehammer. After Jay got that, he slept for about 5 hours. At leas I thought he was asleep. Later I found out that he was completely aware of everything that was going on around him, but he was simply processing it through the psychosis and it was becoming part of the "dream" that he was having. Every word said, every beep of the monitors, every smell of alcohol, everything he saw ended up on a continuous loop that played over and over in his head and wouldn't stop. He was really locked inside his own mind with no way to get out. What started out as a pleasant dream turned into a nightmare as he realized that there was no way to stop the endless loop of stimuli except to die.

At 11:30 or so, the Chief came by and assured me that this was temporary and that they were going to fix it. He also told Dr. Iqbal that if Jay wasn't taking meds and eating, she would need to use a Dobhoff tube. She came in a little later to position it. Jay was aware of what was happening but never responded.

Meanwhile, my pastor, Dan, dropped off two bags of groceries (these will become important later) and prayed with us. He didn't stay long. I think he knew that I was exhausted and needing to concentrate on Jay. But he did bring me the first food that I had eaten in over 24 hours. That was the best sandwich I'd ever put in my mouth. It was a man sandwich, too, which was awesome. I don't know a lot of who get women get jalapenos and banana papers and spicy whatever sauce on a sandwich, but this sandwich had all of it. It was like he was saying, "Look, tofu and lettuce aren't going to cut it for you. Here's what you need, sister." I loved it because it came from the very depths of Dan's heart and his absolute concern for me. He wanted everything to be better, and somehow that sandwich represented his desire to do his very best on my behalf.

Somewhere in the late afternoon Jay's hepatologist came by. Jay isn't under his care right now because he's under the care of the surgeons, but my mom had stopped Dr. Perri that morning and told him what was wrong. I needed to see him so badly. He and Jay are kindred spirits. Both smart and nerdy. Both young dads with kids that they adore. Both teachers. And I needed Dr. Perri to look at Jay and then look me in the eye and tell me that it could be fixed. He assured me that all would be well and that he would be perfectly fixed up really soon. That may have saved my life. That plus all of the FB prayers and posts and messages and texts.

At some point in the evening Jay decided to stop pretending to sleep to complain about the Dobhoff tube.

"There's @#$% in my nose."

We told him that he had to have it because he wasn't eating and taking his medication, at which point he agreed to eat something. Had Dan not come by with groceries, all we would have had to offer would have been cold chicken fried steak and mashed potatoes. But I went rifling through those grocery bags and found bananas. Beautiful. Jay agreed to eat one and then ignored us again. After that he started to pull the tube out. We stopped him, but he had pulled out a significant amount. So much so that he had to be re-X-rayed to see where the tube was.

Other things he said to me at that point included, "Shut up," "Get out of my face," and "Go away." Strangely, none of them included, "Come hop in the bed with me." That was the first time I really felt like I might get Jay back.

He seemed to understand at that point that the only way things were going to go his way was if he ate and took meds. So he did. Then the nurse came to tell us that the doctor wanted to leave the tube in until the morning so that it would be a backup if he started refusing again. Then the nurse called me into the hallway.

"I have a feeling he can hear me, so I didn't want him to hear this. If he pulls the tube all the way out, the doctor isn't going to put it back in."

"Ah," I said. "Understood."

And it wasn't like I let it happen. I literally turned away for a second, and when I turned back I saw a nasty tube laying on his chest.

More bananas. More cereal bars. Lots of water. And finally the request for me to heat up his dinner and feed it to him.

At that point he actually started resting comfortably. He wasn't all tensed up like he had been. He moved his legs around, turned to the side a little bit, and started snoring. I thought there might be hope after all. Dolly showing up to bring me carrot cake and chocolate cake from J. Alexander's didn't hurt either.

The Break (Part 2)

Finally, after what seemed like forever, Dr. Iqbal came in to see Jay. He commented on how beautiful she was, and what a wonderful day it was. He couldn't tell her what was wrong because there was nothing wrong in his world. In fact, he kept repeating over and over that "I'm just messin' around." Dr. Iqbal said that Jay would be having an ultrasound to see if the liver was working properly, and then told me that his ammonia level was normal. That was a real relief after Mr. Foot-in-Mouth Paramedic's inspirational story.

Meanwhile, he kept telling me to look behind the curtain in the room because that's where Joshua and Clare were. Over and over again he insisted that all I had to do was look and they would appear. He was finally transported to ultrasound where I got to see his beautiful new, smooth liver. I was so disappointed that Jay was so delusional because, in his right mind, he would have loved to have seen it too. When the ultrasound room door opened, Jay said, "Hey guys!" I asked him who he was talking to, and he told me that Joshua and Clare had been waiting right outside the door.

Back to the ED we went, and the nurse attempted to give Jay his normal medications. He smelled them, he smiled at them, but he didn't take them. I'm not sure how the nurse and I managed to convince him, but he finally took them. And insisted that he was "just messin' around."

He was transported to a room on 10 South and became absolutely and completely non-compliant. He wouldn't eat, he kept getting up to leave, and he became uncharacteristically and uninhibitedly amorous. Fortunately, that was only with me. I had visions of him trying to get the nurse into the sack with him, but I was the only thing on his mind.

My parents both came to us, but the more people that surrounded Jay, the more agitated he got, and the more often he'd try to stand up and leave. Sometimes I could get him back on the bed by insisting that he was being disrespectful, but that didn't always work. He really wanted to dance, so sometimes I could dance him back to bed. But what we really needed was some Seroquel. And the nurses let me me put my rollaway bed between his bed and the door so I could block him in.

Later in the night, after Jay was horizontal and had stopped trying to get me to be horizontal with him, my friend Dolly came by. Our moms have been friends since the beginning of time, and I used to babysit Dolly. Now she's a Nurse Practitioner and married with two kids of her own. Her appearance was a total surprise, but as soon as I saw her I threw myself on her and sobbed like a baby into her shoulder. I told her how scared I was and she told me that she understood. And she did, because not long ago her husband went into complete renal failure. He recovered quickly, but she understood my abject fear. We talked for a little while. Jay remembered who she was and who her husband was, which made me feel a little bit better. At least his memory wasn't gone. She left with promises to bring dessert the next night and I went to bed.

First I crawled in bed with him (a hospital bed is really too small for that nonsense) and rubbed his head until he went to sleep. Then I got in my own bed and tried to sleep, but Mr. Manic laid awake for most of the night babbling. I would look over occasionally and tell him to close his eyes and be quiet. He would do it for a second and then start yammering again. It was like getting a three-year-old to sleep.

And I thought that was the worst part.

Friday, March 30, 2012

The Break

Monday morning we got up really early. I was worked up about some emails that I needed to write for work, and Jay was done sleeping, so we got up at about 4:30. We were due for labs at 8:00am and Vanderbilt, and when we got there Jay was a little confused. Red flag #1: We were waiting for the lab orders and had been sitting there for about 10 minutes when Jay look at me and said, "What are we waiting for?" I told him we were waiting for lab orders and he said, "Oh. Right."

We got blood drawn and then I took Jay to Noshville for breakfast. Red flag #2: Jay let me pick out his meal. Red flag #3: He kept smiling at everyone around him. Like going out of his way to catch their eyes and smile. If you know Jay, you know that's actually not Jay at all.


We got back to the apartment and I called the Transplant number. It's a 24-hour line that we're supposed to call anytime we have concerns or questions. I left a message and told them that we had forgotten to bring home the anti-fungal powder from the hospital and that we needed a prescription for it, that Jay had a lot of lower extremity edema, and that he was acting weird.

After I left, Jay called his mom. Or tried to. We had asked her to register our car and he wanted to follow up. He kept looking at his phone and looking out the window. He looked like he was trying to call, but then he'd get distracted and look out the window some more. I finally gave him the number and dialed it for him. Red flag #4: At the end of the conversation, Jay said to his mom, "I love you so much, mom. Thank you for everything."

As we were walking out the door to grab some lunch, my phone rang. It was the nurse calling back. She said that she had just gotten his labs back and that some of his numbers (WBC and liver enzymes) had bumped up a bit, and that the doctor might want to see him during the day. Red flag #5: While I was talking to the nurse, Jay reached down and actually smiled while he tried to grab the phone out of my hand. I smacked his arm and he just smiled at me.

Red flag #6: On the way to Puckett's for lunch, Jay kept telling me that I was beautiful, that the world was beautiful, and that he loved me so much. He didn't want to stop holding my hand, and he got on the elevator going up even though we were going down.

Jay only ate a few bites of his lunch and kept saying that he wanted to talk to Joshua. This craziness went on and on until I finally convinced him to lay down and take a nap. During the nap, the nurse called to tell me that Jay had an ultrasound scheduled for 4:30. The phone woke Jay up, too, and again he went with the beautiful stuff. The kicker was when we were watching a video about The Turnip Truck and he started to cry.

"Why are you crying?" I asked.

"I just hope that the hungry people in the Gulch get the food that they need."

"Jay, it's the Gulch. There aren't hungry people there."

"I know, but what if a homeless person rolls through?"

I went to the bathroom and left the door open because I wanted to keep an eye on him at all times. He was just getting more and more bizarre. I looked out into the hallway and saw him put his phone down on the bedroom dresser. He walked by and said, "I just talked to Joshua. He's happy."

"Jay, it's 2:30. Joshua is still in school."

"I know. He's happy."

I called the transplant line immediately and told them that I was bringing him in right now. At least that's what I thought. He had settled in the bed (with no drawers on) and wouldn't get up. I told him that the doctor was waiting to see him at the hospital and he just smiled at me and tried to rub my hair. I tried to put his pants on him, and he and his dead weight just smiled at me. I put his shoes on him and he smiled at me. I told him again to get up. Yes. He smiled at me.

Then I called the paramedics. I've never done that before. I've had dreams in which I've called an ambulance but the ambulance never comes, which doesn't exactly engender a lot of faith in the process. But the dispatcher was amazing, and there were firefighters in my bedroom within 10 minutes. Jay wasn't going to get out of bed for me, but stick 5 hulking paramedics around him and he was going to move one way or another.

I was scared to death that they were going to use more force than he could handle, especially since he was split from side to side. But they were very sweet and gentle. They got him on the stretcher, but he wouldn't let me out of his sight. He rode the whole way down to the lobby and out the door sitting straight up with his arms out in front of him. When we got on the ambulance he informed us that he was then going to open to roof of the ambulance wide open.

I had a nice conversation with the paramedic who rode in back, and was amazed that Jay wasn't in more pain given that he was sitting straight up throughout a bumpy ambulance ride. The only mistake the paramedic made was telling me that his own uncle had had a liver transplant and acted like Jay was acting because of ammonia. When I asked what happened to his uncle he replied, "Oh, um. He was old and probably wasn't a good candidate anyway."

Great.

We finally made it to the Emergency Department, and all I could think about was seeing someone who could tell me what was going on.

Thursday, March 29, 2012

What Happened After What Happened Next

Looking back on it, Jay started acting a little funny on Saturday. In fact, on Friday he was already saying that he felt a little "space-y" and that he wasn't really comfortable going home. But everybody shrugged it off as exhaustion and suggested that he just get some good rest.

As soon as we got to my dad's house, Jay went directly to bed. He didn't sleep, but he did rest, and I thought that was great. He made several comments to the effect that he felt like he had no "filter," and he needed me to help him make decisions. He would have me screen emails and texts to make sure they were appropriate, and I received several texts from him during the night on Saturday night. He kept thinking of things he wanted to talk about but was afraid he would forget, so he texted me. I was sleeping in one guest room with the kids while he was in the other guest room, and I didn't have my phone with me, so I didn't think anything of it.

On Sunday morning I went to church with my dad and the kids, but I was a smidgen uneasy about leaving him alone given his own concern about his impaired judgment. I texted him during the service to see if he was OK and he replied that he was "thinking." I sent him a video of the congregation singing the doxology, and when I came home he was watching it and getting teary. I hung with Joshua and Clare for a little while longer and then took them halfway to Jackson to drop them off with Jay's parents who had gone back to Jackson on Saturday night. When I got back to my dad's house, I asked how Jay was. Dad said that he had stuck his head in the room a few times and Jay was awake every time. Thinking.

Jay and I packed our things and went to our temporary apartment. All was well except when we got stopped for having expired tags. But we survived that ordeal with a warning and got settled in. My mom brought over a lasagna and some rolls. Jay and I sat together and ate. We talked a lot about the new perspective we each had as a result of the surgery and shed some tears.

Then we went to bed in our new place. But we only got one night.


Sunday, March 25, 2012

Eviction

Early Saturday morning two members of the liver team came by. They asked Jay some questions to see how he was feeling about leaving, and he reiterated that he didn't exactly feel up for it. They left and then Jay decided to go shave before Dr. Wright came by.

Do you see where this is going?

Dr. Wright came in with the two doctors who had just been there. When he asked where the patient was, I pointed to the direction of the shaving sounds. Jay's argument was pretty much dead in the water at that point. So he had his last drain tube removed, which wasn't nearly as bad as the first two, and he had his IV removed. And that was it. It was time to go. We did one final med check, I checked on our transplant buddy, and we were out the door.

We went home to my dad's house in time to snuggle with the kids (Jay's parents had brought
them back) before Joshua went to go see Mary Poppins with his friend Amanda. Jay went straight to bed and stayed there, which was good since he had totally overtaxed himself with entertaining visitors the day before.

I snuggled with Clare, and then she and I met Joshua and his people for dinner at Bucca di Beppo while my dad made burgers and beans for the rest of the Bernheisels.

We have so much to be thankful for.

The Last Full Day

Sleep should have been easier on the step-down side, unless your husband likes to go for a jaunt around the unit in the middle of the night. At 2:30am the nurse came in to give meds. I woke up to a fully lit room, Jay sitting up, and Gary the Nurse getting Jay's pills ready. After meds Jay went to the bathroom (and discovered that his bowels did indeed work! Yay!) and then invited me to go for a walk with him. We passed the room where our transplant friend was sleeping and said a little prayer for him. We made several laps around the unit, and then Jay let me go back to sleep.

Friday began with grand rounds and brought a lot of visitors. During grand rounds we were able to see the entirety of Jay's care team: dietitian, social worker, three surgeons, and the Chief of Hepatobiliary Surgery and Liver Transplantation. The Chief and Jay's surgeon had a good-natured argument about how much longer to keep Jay, but it was clear that they both thought he was ready to be discharged.

Then the visitors poured in. Three Union faculty members and one Union student came to visit in the morning, Jason and my dad came in the afternoon, and my forever-and-always best friend Sarah came after she got off of work. The lady from the pharmacy came to drop off a shopping bag full of meds and paraphernalia while dad was there, and when Sarah was there, the transplant coordinator came to tell us how it all worked. On Thursday I had started doing all of Jay's blood sugar checks and insulin shots, but the glucometer that I took home was different from the one in the hospital, so I learned how to use that. I fired up the blood pressure cuff and inventoried all the meds. It was a little surreal. While we were sitting there with the transplant coordinator, Jay mentioned that he didn't really feel confident enough to go home and that he was hoping to be able to stay until Sunday. The coordinator said that she would pass that along.

The other excitement was that Jay got to eat solid food at lunchtime. His food was delivered at the same time the amazing dietitian came to check on him, so we had fun giving her a hard time about why sweet tea had been served at every meal.

The daughter of church members stopped in to check on us so she could tell her mom that we were doing well. She is a Family Nurse Practitioner and was so precious for coming by.

Sarah and I finally got to visit after it was all over, and then Jay sent us off to dinner. We grubbed on pizza at The Mellow Mushroom and caught up on life. For BFFs who live two hours apart, we don't see each other much, but when we do it's like we were just together the day before. More things that make the heart happy.

When I got home Jay was resting. I stayed up because I knew it wouldn't be long before the nurse came back in for more meds, and I assumed that Jay would want to go for another walk after that. And he did. So we walked. And took pictures of our matching socks. And celebrated with a happy picture.


Friday, March 23, 2012

It All Moves Very Fast

The next night didn't allow for much sleep either. With meds scheduled every four hours and going to the bathroom taking a really long time, sleep doesn't exactly come easily. Although I have to say that I did sleep through one trip to the bathroom and then felt really guilty for sleeping so soundly. I have mother ears. I should be able to hear someone cough into their pillow from the other side of the hospital.

Lots of things happened today. In no particular order:
  • My cousin's wife Amanda (let's just call her my cousin, too, for sake of ease) came in bound and determined that Jay was going to walk. And walk he did. Once with a walker (which he eventually picked up because he was tired of hearing it squeak) and once without.
  • My mom brought me breakfast. Yum.
  • Jay had two of his drainage tubes taken out. He's has a pretty high tolerance for
    pain. In fact, his very first colonscopy was on my birthday several years ago. He wanted to be able to enjoy my birthday dinner without having residual effects of pain meds, so he just told the doctor he didn't want any. But those drainage tubes hurt. Badly. He stopped the doctor from removing them and got the nurse to push some pain meds through his central line. They didn't help at all. I've never seen him in such agony.
  • The transplant pharmacist came in to do a LOT of medication education.
  • My friend Amanda brought me a frappucino and visited with me for a bit while Jay rested.
  • My dad stopped by to take me out to dinner. Just before we left, Jay wanted to go for a jaunt around the unit, and we all walked along. The nurse found us along the way and told us that we were moving across the unit to the step-down side. So we headed back to the room and packed up the stuff. Turns out the new room is the sweetest one in the house. It's the largest, and has an amazing view of West End. And the construction right next door. It was like a bonus prize for an engineer.
  • Dad and I did eventually get to go out for reubens at Noshville. Yum. I heard music for the first time while we were out, and it made me cry.
  • I spent a lot of time on the phone looking for a corporate apartment to rent after Jay is discharged.
One of the most amazing parts of the day came when my dad dropped me off from dinner. I was walking through the main waiting area when I heard someone say, "Hey! Hey!" It was the wife of a man who was going through transplant evaluation at the same time Jay did. Her husband was in surgery at that very moment, and his surgeon was the same as Jay's. We had a happy reunion and I talked her through some of the things that I wish I'd known. It turns out that he was third on the Type A list right after Jay. Things that make the heart happy.

More of the Longest Night (Because One Entry Wouldn't Be Enough to Cover the Longest Night, Would It?)

Then the respiratory therapist came in to make sure the extubation went smoothly. And it did. I can't imagine being extubated while awake, but Jay was a champ.

To be honest, I don't remember much after that. I remember that I stayed up for awhile to talk to him about the day, and to watch Patrick work his magic. And then I went back to sleep.

The next day? I got up just before the liver team made their rounds to tell Jay that he looked amazing, and at about 7:00am I texted my mom that she could come over anytime, and I let Jay's parents know that they were welcome to come too. Then I took a shower. Because I was grody. Again Patrick with the towels, shampoo, and toothbrush.

My mom brought the kids who got exactly 5 minutes to be with Vati before I made them leave. I was as nervous as a long-tail cat in a room full of rocking chairs with them in there. There were way too many tubes, wires, and staples for them to be there. And besides, they were much more interested in the fact that the couch turned into a bed and that I slept in Vati's room. Jay's parents visited. My dad stuck his head in. David and Amanda and Becki came by and entertained my babies in the waiting room. My mom gave me half a loaf of banana bread that ended up being my breakfast. And then I sent Joshua and Clare packing back to Jackson with Jay's parents.

Joshua was ready, of course. He had a contract at school to complete, for heaven's sake, and he'd already missed two days of school. Clare, however, was none too thrilled about leaving either my mom or me. She had had over 24 hours straight of love from Gran, and was not going to give up easily. So as we took her down to the car she was in absolute hysterics. When I loaded her in the car she was a basket case, and as I walked away from the car I could still hear her.

I asked her on the way to the car if she would like me to call my friend Gina and have Gina come over and love on her. That seemed to be a good idea. But when they arrived in Jackson, she called and was still in hysterics. Turned out she had actually slept in the car and only tuned up again when she got home. But then Gina the Great showed up to play and deliver food and all was well. It's good to have a village.

Meanwhile, the nurses took out several of Jay's lines, including two that went from his neck into his heart (Ick!), and encouraged him to sit in a chair. He finally made it although he didn't look to comfortable. His other accomplishment was to drink sips of water. Baby steps.

They also took out his catheter, and the anaesthesiologist stopped by. He told Jay that the hardest part of the surgery was taking out his old liver. It was so huge that they had difficulty removing it, despite the fact that the incision was almost from one side of his belly to the other. Wow.

Jason, also an important part of the village, brought over leftover Famous Dave's from his daughter's birthday party, along with lots of veggies and other yummies for lunch. While Jay drank water.

But not for long! On Wednesday night he got broth! And jello!

During that day, two of
his surgeons came in (it took three to do the surgery), as well as his hepatologist. Everyone was impressed with his progress and reported that his labs indicated that all was right with the new liver so far.

Longest Night

Patrick arranged Jay and his accoutrements the way he (Patrick) wanted them (after putting together that Amanda and David shared a mutual friend with Patrick. What a small world) and then got some linens for me so that I could sleep. He was quiet and amazing and I crashed hard. Until I heard people talking to Jay.

"Mr. Bernheisel. Can you open your eyes for me? Mr. Bernheisel. Can you squeeze my hand?"

I went flying out from behind that curtain like I had been shot from a cannon. It took me a minute of standing there half-asleep to realize that nothing was wrong. Patrick explained that they were preparing Jay for extubation, and to do so he was cutting his sedation by half just to see "how" he was going to wake up. Was he going to freak out? What he going to be scared? He bit down on the tube a little bit but stopped when they told him to stop. And then they turned the sedation back up again.

The next time they pulled that stunt I was prepared. But the next time was the time. They turned the sedation down and started cutting back on his ventilation. It only took a minute before he was breathing over the ventilator, following instructions, and waking up.

Then there were about 20 magical moments when I got to rub his head, tell him that everything went perfectly, tell him about all the people that had been waiting in the waiting room, and about all the people that had sent texts and messages. He started to sign, despite wrist restraints. He wanted to know how many people were there, and who was there. And then he signed

C-R-Y

and I saw the tears in the corners of his eyes.

What a miracle it must have been for him to wake up and know that everything went well and that he was safe and cared for. And it was pretty amazing to be able to tell him all of that. Time stood still.

And the next sign was

W-I-N-N-I-N-G

Indeed he was.


Patrick the Great

When we got back we went straight up to the SICU. They took us to Jay, who was still intubated. He looked great, and he was being cared for by the greatest nurse I've ever seen in action. I'm biased, of course, because he was taking care of my husband; I wouldn't have been surprised if he had sprouted wings and a halo. It was 9:00pm, we were all nearly delirious with exhaustion, and Nurse Patrick was as kind and hospitable and professional as he could have been.

And there we were. We pretty much just stood at the end of the bed and stared at Jay. There wasn't much else to do. I think we were all so glad that he was actually there that we just wanted some time to let it all soak in. Rev. David had left before SATCO to finally go home, so it was Jay's parents, my dad, and Jason. My cousin David and Amanda came up later as they had stopped to get earplugs for me at CVS. When they came up they had my Aunt Becki with them. Fun note: Between all of us that had spent time with Jay that day, six were pastors. I don't know whether that's good or bad. Or just plain weird.

But when we all finished staring at him it was time for bed. At least it was for me. I eyed the pull-out couch in the family alcove off the main room and heard it call my name. And then it was time for sleep. Or something.

Waiting

We all took turns spending some time in pre-op with Jay. David and I went first, and I had to really concentrate on not be distracting so that David could be pastoral. He prayed. I cried, and then Jason and my dad went in for a quick high five. Finally Jay's parents went in. Then the anaesthesiologist came in to review how it was all going to go down. We also made friends with Cindy, the pre-op nurse. Between her and the floor nurse we were with prior to pre-op, Jay was called Sunshine, Baby, Sweetheart, and Precious more times than we could count. But I think he liked it. And then they wheeled him off. And we waited.

In the main waiting room is a monitor that lists the first name and last initial of everyone in surgery, along with the start and stop times of the operation. And, apparently, if you have awesome people in your OR, those awesome people post little notes to update family members on how their person is doing. We got two updates. They were reassuring.

David, Christie, dad, and I went to Au Bon Pain for lunch and then back to the waiting room to do what you'd think we would do in a waiting room. My dad left with plans to return, David kept me plied with alternating classic David sarcasm and profound conversation. Looking back, I'm pretty sure it was his presence that kept me sane. Despite the fact that I kept reassuring him that he could leave, he stayed. Because he's amazing. And he's the one who leaned over to show me the email from church announcing that Cecil and Tharon Kirk, two of the most amazing people who ever drew breath, and who lost a grandson in a tragic car accident less than two weeks ago, were leading a prayer service in the chapel at church at noon for Jay. After that I was pretty certain that Jay would be OK. I think Cecil and Tharon have some sort of special line to God.

Then my cousin's wife Amanda came. And then my cousin David, and then a member of our church who is a chaplain at the VA Hospital adjacent to Vanderbilt (also named David). And by the time it was all over we had assembled quite a crew. We decided that we should have actually made it a Facebook event, and wondered if Mark Zuckerberg wanted to know who Jay Bernheisel was. The number of texts, Facebook messages, and Facebook posts was overwhelming. It was so good to be connected to the rest of the world when my own world felt as small as a circle of chairs in the back corner of a hospital waiting room.

The surgery monitor said that the surgery started a 1:16 and that it should be over by 6:10. At 6:15 I started to get a little antsy. At 6:30 I started checking the board every minute, and at 7:00 I started to come a little unglued. Finally we heard our name over the intercom and were directed to the Family Consultation Room. It wasn't long before the surgeon came in to tell us about the surgery. According to him, it was as good as anyone could have hoped for. The donor liver was beautiful, Jay only needed five units of blood, and the surgery went completely smoothly. He said that all we could do now was wait and watch the numbers to see if the liver was going to work. He said that Jay would be on SICU in about an hour and that we could see him then.

We went back to the waiting room to report to the rest of the crew and then someone mentioned dinner. The word had been thrown around for the last few hours as though I would actually eat something. But after the surgery was over, despite protests to the contrary, I was told that I was going to eat dinner--preferably outside of the hospital. When someone suggested SATCO I decided that I could be persuaded. So seven of us traipsed down 21st Avenue in search of tacos and fresh air. Dave stayed behind. And we ate. And drank. And pondered the question, "Given the glory of tacos on the porch in the spring, would you want to do college all over again?"

And then we went back to see what was happening.

A Room for Six

We got to Vanderbilt at about 3:00 and had to enter through the Adult Emergency Room. Dave hefted the kids and took them in while I went to park. Once the security guard finally went through all of my bags and sent me through the metal detector a few times, I was pretty sure the whole surgery had already started and ended. But it hadn't. When I finally found the room Jay told me that the surgery was scheduled for noon. Huh. That was a long time to wait.

My backup plan for the kids was that they would be sooo exhausted that they would find a comfortable place to rest and sleep for awhile. That idea was more misguided than the first. They did lay quietly on the extra bed for a little while, but then awesome things happened like nurses coming in to start IVs, and who can sleep through that? I counted the minutes until 5:00am when I felt like I could safely call my mother and have her come get them.

"I'm down the street. Can you come get my kids?"

In hindsight, no one should have to translate, "I'm down the street," into "Jay's at Vanderbilt for his liver transplant," but we finally communicated with each other. And before they left with her, Jay had the talk with them. He told them that he loved them and that he was proud of them, and that he was proud of the community of which they were apart. And then Clare came unhinged. Of course it was more exhaustion that anything else, but her poor tender heart did NOT want to leave her Vati. But then she saw Gran and all was right with the world. They left at about 5:45.

The surgeon came in around 7:00, reviewed with us again the CDC's "high risk" categorization of the donor liver, and assured us when asked that he would recommend his own family to take the liver if he was in a similar position. Then he left. To go procure the liver. That dude had a long day.

At 11:00 Helen from transport came to do some manscaping and then to take him down to pre-op. By that time my friend Jason, my dad, and David Hollis had all arrived. David is the other Associate Pastor at FUMC and had been given strict instructions NOT to drive all the way to Nashville. But there he was, with my computer that I had left at work. And off to pre-op we went.

Groggy

Sherry reminded me of who she was and assured me that she was also groggy, as the doctor had awakened her to let her know that a liver was available. So we made a little small talk until both of us were a little more with it. She told me that she needed to let me know that the donor was consider high-risk because his girlfriend was a former prostitute, and wondered if I wanted to talk to Jay about that or whether she should have the conversation with him. I suggested that she have that conversation since I knew Jay would have lots of questions for her. She also said that the doctor offered to talk to Jay, too, if Jay had any concerns. I assured her that she could reach Jay by cell phone, hung up, and promptly called Jay on said cell phone. Jay doesn't sleep much these days, but when he does, he does. Turns out that the phone actually woke up his mom. Jay missed the call but called Sherry right back. I was just calling to make doubly sure that he had answered.

Meanwhile, I woke up Jay's dad and told him that there was a liver, but maybe not to wake up too much since Jay hadn't yet given the thumbs up. Pretty soon after that, Jay called me and a quick conversation confirmed that we were both interested in moving forward.

He headed out to the hospital with his mom while Jay's dad and I prepared everything at home. Dave hit the button on the coffee pot, I loaded up the pre-packed bags, we got the car started, and then we went to get kids.

Now, in my head, the kids would transfer to the car without waking up, sleep all the way to the hospital, transfer into the hospital, and sleep until their usual wake-up time. But we all know that didn't happen. They were awake--but as quiet as mice--all the way to the hospital. Clare mentioned that she couldn't get "Little Bunny Foo Foo" out of her head and Joshua wanted to know if his absence from school would be excused. And if I had remembered to bring their toothbrushes.

Meanwhile, Dave and I chugged the carafe of coffee as we zoomed down I-40.

Thursday, March 22, 2012

The Start of it All

When Jay's transplant evaluation was finished, we waited. We waited to find out if the surgeon felt that the risk of cholangiocarcinoma was too great to go through with the transplant, and when we didn't hear from him, we waited to find out if Jay would be listed. We found out on Ash Wednesday that Jay would be listed, and the next day we found out that he was actually third on the list.

The next week (March 5) Jay had some labs done because the hepatologist had put him on a diuretic and wanted to see what, if any, effect it was having. When those lab results went to the hepatologist, Jay's MELD score was recalculated and we got a call on Thursday (March 8) saying that Jay was first on the list. I walked around that morning in a daze. I got out sheets and towels for my in-laws who we knew would come up for the transplant. I packed my bag. I cleaned the toilets. I folded the laundry. All while waiting for the phone to ring; Vanderbilt calling back immediately to let us know that a liver was ready. But it didn't happen. In fact, it didn't happen for so long that it was time for Jay to get his labs done again (March 12). This time, his MELD was still a 26, but he was second on the list. We relaxed out of full crouch mode and finally exhaled.
Second on the list! Well, if he didn't get it for the week that he was first on the list, then we were certain not to get the call anytime soon!

Last Monday (March 19) Jay went to get his labwork done, did some work around the house, and went to Nashville with his mom (his parents were visiting for a long weekend) to spend the night because he had a regular appointment with the hepatologist on Tuesday morning. I stayed up late to watch basketball and read, and I had only been asleep for an hour or so when the phone rang.

It was one of those moments when you're asleep and something happens in the deep recesses of your brain. I woke up thinking that it must have been the phone that woke me, but I couldn't be sure. I stared at the phone and dared it to ring again. It did. With a 615 area code. Of course I knew exactly what it was.

"Hello?"

"May I speak to Jay?"

"He's in Nashville tonight because he has an appointment with Dr. Perri in the morning." (I'm glad it was someone from transplant because anyone else would have thought I was a lunatic)

"This is Sherry, one of the transplant nurse practitioners and I'm calling to offer him a liver."