Not what we expected

Please hug your loved ones a little tighter today….and every day. I will warn you in advance that this journey does not have a happy ending.

I’m writing this from my Mom’s house in Minnesota. I came here on Tuesday, March 1st to be in town for my Dad’s heart surgery. He was going to have a valve replaced and a bypass on Wedesday (March 2).

Dad was almost cocky going into the surgery – assumed he’d be in the ICU for a couple days, then in a regular room for a few days, then heading home. He had made plans for his recovery at home, purchasing a foot-operated recliner, since he wouldn’t be able to operate a regular one for a few weeks. He also had a TV installed in his room on the main level, since he wouldn’t be able to get the basement for a while. I planned originally to stay until Friday, when we thought he’d get out of the ICU. I figured at that point I would be fairly comfortable leaving Dad, knowing that he was on the mend.

On that Tuesday, Mom and Dad (along with my niece, Anya) picked me up from the airport after an informational class about recovering from heart surgery. During the afternoon, Dad was busy making sure that things were in order at the house so Mom would have a relatively easy time while he was in the hospital and during his recovery. This included a trip to the car repair shop, where the owner gave him a loaf of focaccia bread – somehow Dad always knew which day the owner would have fresh bread! That evening, we decided to go out for dinner, Dad, Mom and I. We went to Pizza Luce in St. Louis Park, and had a fun time. (Mom and I obsessed for a while about a closed-off door near our table, until the waitress opened it up for us to see that it was just another dining room.)

We had an early-morning on Wednesday, needing to get Dad to the hospital by 5:30 AM. The whole family showed up to see Dad off, including Dad’s best friends, Dick and Sharon. We took a picture in the waiting room.

They took Dad back to get him in his hospital gown, and ready to be wheeled off to the OR. Before they took him, we were able to see him one last time.

As they wheeled him off, we all sent him with well-wishes – he didn’t want us to say good-bye. My last words to him while he was conscious were, “I’ll see you soon, Dad,” along with a big hug.

From there, the family went to the hospital waiting room. Mom was issued a beeper along with a list of the events that would trigger the beeper, such as entering the OR, Dad being put on the heart and lung machine, closing OR. We were also issued a number for Dad that would appear on a computer screen telling us about those same events. The surgery was supposed to last about 6 hours.

Our first clue that things were going awry was about 6 hours after the surgery started. Dad had not entered closing, and was still listed as on the heart and lung machine. Mom got a page shortly after that and went to talk with a nurse (?) about Dad. Turns out that the repair and bypass had gone fairly well, but they were having trouble stabilizing Dad’s blood pressure to get him off of the heart and lung machine. They had also discovered that his aorta was slightly damaged, so were doing some kind of repairs to that.

Finally, around 6 or 7PM, Dad was finally out of surgery and brought up to the surgical ICU. The surgeon came to talk with us about the surgery and Dad’s current state. It turns out that Dad’s bad valve was much thicker than a normal valve – a normal one is cellophane-thin; Dad’s was a good half-inch thick. Because his heart had to work so hard to push blood through that valve, his heart beefed up (the surgeon called it a “Schwarzenegger” heart). Unfortunately, in beefing up, one of his heart chambers became much smaller than it should be. The surgeon was surprised that Dad had come into the hospital under his own steam. This, and the damage to the aorta, were all surprises during the surgery.

Because Dad had been on the heart and lung machine so long, he had taken in a lot of extra fluid (40 pounds, from what we heard). He was so bloated that they were unable to close his surgical incision. They covered it, plus he was on high doses of several blood pressure medications, a ventilator, and was being kept in a coma-state so he wouldn’t aggravate his open chest. The surgeon indicated several times that Dad was “a very sick man” – but somehow I don’t think it completely sunk in for any of us.

After another hour or so, we got to go in and see Dad. I won’t lie…it was pretty shocking. He was on the maximum amount of life support, and he did not look much like my Dad, but we still thought he would get better. Wednesday night we decided to all go home after we saw Dad. My Mom’s guest bed felt so good that night…

…until 6:20 AM, when Mom woke me, saying that the hospital had called and told us to get there as soon as we could, Dad was going back into surgery. I dressed in about 2 minutes. Mom, too. We also had a little girl who slept over, so we got her dressed and out to the car. Somehow we also called my brothers, Dave and Kevin, and my grandmother, but were in the car by about 6:30. While I drove, my mom also called Sweetie to see if she could pick up Gram in Red Wing (an hour drive away). Kevin called a few minutes later from the hospital, wondering where to go. Mom asked Kevin how he got there so fast, and Kevin replied that he had wondered why it took him so long. Time was playing funny tricks.

We didn’t get there in time to see Dad before the surgery, but we knew that ahead of time. We went straight to the surgical waiting room and proceeded to wait. We had no idea how long it would be, not even sure if they would have to put him back on the heart and lunch machine, which we thought would probably kill him. It turned out to be a short surgery, and when the surgeon came back, he was fairly happy. He explained that they had trouble regulating Dad’s blood pressure overnight. When they went back in, there was some blood pooling around his heart, so they put in a few more drains, which seemed to solve the problem. The surgeon indicated that it was the best possible reason he could think of for Dad’s overnight condition.

At this point the days start to run together. We decided that we wanted to have at least someone at the hospital at all times. That first night I slept in the hospital waiting room with my Mom and both brothers. Subsequent nights I made Mom go home and sleep while Dave and I slept in the hospital. My husband arrived from Virginia on Friday, because after Thursday’s surprise surgery I thought it would be best if he were here. Mainly I wanted him here to help out with my Mom and Grandma, and I needed him here in case anything went wrong. Sigh.

Dad also went on full-time dialysis to regulate the fluid in and out of his system. My best friend was worried at this point, because she had never seen someone come back after their kidney stopped functioning. However, the surgeon told us on Saturday that Dad was making small amounts of urine, so his kidney seemed to be coming back. They continued the dialysis to try and pull fluids from his body – trying to lose some of that 40 pounds of fluid-weight he gained. They had to do it slowly, because slight changes to his body caused changes in his blood pressure.

Dad went back into surgery again on Sunday, but only to clean his wound to make sure no bacteria were present. They also pulled out the balloon pump helping his heart, because he didn’t seem to need it anymore.

We would go in to see him periodically, telling him about the people who visited and left comments on his CaringBridge site. I’m sure he could hear us. My cousin-in-law, Devon, makes and decorates cakes, and often gives Dad a tupperware full of cake and frosting. Every time we told him that she had cake in her fridge for him, and that she might just toss it if he didn’t get better soon, his blood pressure went up. I know he was fighting.

The nursing team was fabulous. We tried to stay out of their way, but they were more than happy to have us in the room when they could work around us. They would keep us up-to-date on his medications and condition. It seemed that Dad was making baby-steps in the right direction. By Sunday, Dad was off of two of his blood pressure medications; however, due to a national shortage, he had to be switched to two other ones Sunday, which were not as good as the initial one they had him on.

I don’t remember much of those days. My nieces where there Wed – Fri and came back Mon morning (they spent the weekend with their cousins). Two of them got to go to see Disney’s Princesses on Ice on Thursday, the other went to the MN Rollergirls on Saturday. I spent the time playing Zoo Tycoon and on a crafting project. I didn’t really have the brain power for much more. I did go to my Mom’s house for a few hours every day to nap and shower.

We also bonded with another family there with their mother. The first night, they were told she would not make it through the night. By Monday, she was off her ventilator and causing “trouble”, so they gave us some hope. Unfortunately, there was another family there who had just had to make the decision to discontinue life support. This put Mom and me in a bad state, wondering how we would handle that decision if it came to that.

Monday morning, my brothers and I went in to see Dad around 6AM – we wanted to get in before the nurse’s shift change (when we weren’t allowed in) between 7 and 8:30 AM. The night nurse, Kevin, was very optimistic – he said Dad had had a pretty good night, and he was able to pull another liter fluid. There were some issues trying to deal with the new blood pressure medications, but all seemed to be well by the time we went in there at 6AM.

When I came back to the waiting room after breakfast (around 9?), we were still unable to see Dad. This wasn’t terribly unusual – Dad’s shift change always seemed to take a bit longer than the blackout, so we weren’t overly worried. At this point, it was me, Dave, his girls, and Dad’s friend, Dick, in the waiting room.

Around 10:30, a nurse popped into the waiting room and asked if my Mom was there. She was not, and the nurse said to get Mom here as quick as she could. I called home to get Andrew to bring Mom and Gram to the hospital. I also called my best friend. Shortly after that, Dad’s surgeon came in to tell us that he wasn’t sure what was the problem, but he was going to go back and try a few more things on Dad.

What seemed like a couple minutes later a couple of doctors came into the room. It was still just me, Dave, his girls, and Dick. We didn’t know these doctors, but they had apparently been on Dad’s case since Thursday or Friday. I don’t know exactly what they were saying…I still thought they were coming with news that they had stabilized him. Then one of them started saying, “we did everything we could for him…”, and I started thinking, “wait…that’s what they say when someone dies. What are they telling me this for? They must be wrong.” Then it started to hit me. Dad was gone. He fought, but it was just too much for his body. My Daddy was gone.

Kevin arrived soon, then my sister-in-law, my best friend, my husband, Mom and Grandma. One of the hospital chaplains also showed up. I’m not religious, but I know he was a comfort to many of my family. After about a half hour or 45 minutes, we finally got to see Dad – we had asked them to remove all of the tubes and machines from him, so it took them a while to clean him up.

Finally we got to go in his room and say good-bye.

So please hug your loved ones tightly today and tell them how much they mean to you.

Tags: family, suckitude