Life Recovering at "Home"

It's funny to think about being "home" from the hospital. While I'm not at Stanford anymore, that's true, I'm not home either. I am actually still in Menlo Park with my sister-in-law, Kristi, and brother-in-law, Paul, Dan's dad, Jim, and Paul and Kristi's boys Ian and Adam and will be at least until the beginning of July. It's quite a house full and despite that Paul and Kristi are expecting their 3rd boy in July, they have made us feel so welcome and loved. I just wouldn't have it any other way. We are so fortunate and blessed that they live so close to the hospital. I keep reflecting back upon the chain of events and how everything has been pieced together in such a "perfect" way.

On Monday the 3rd, Cayden was discharged from the hospital. I was so surprised they were ready to let him go so soon, especially since we were originally told he'd be in for about 2 weeks. Cayden really wanted to be home, and the doctors agreed it was the best place for him. Knowing how hard it was for me to get settled coming home the day before, Dan ran out to get an inflatable camp bed so Cayden wouldn't have to navigate the cousins' bottom bunk bed, which was so low to the ground.

I spent about 30 minutes looking over all of the new medications and the schedule for each one. Some he only takes for a few weeks, some will be adjusted, and yet some will be started in a couple of weeks. Nothing he was now taking was like what he took prior to the transplant. The most difficult was going to be the Prograf - Cayden's anti rejection medication. He was supposed to have no food or drink from 7 pm to 8 pm, take the Prograf at 8, then nothing to eat or drink until after 9 p.m., when he also took the rest of his medications. In addition, we had to do the exact same thing 12 hours later.

The first night was terrible. Cayden woke up at 1:45 a.m. and was having a ton of pain in his chest and abdomen area, all around the incision. Ironically, I woke up at nearly the same time, experiencing the same thing. In his exhaustion, Dan had forgotten to set his alarm to give Cayden the pain meds at 1:00 a.m., and it was already taking its toll. Cayden was insistant and ready to head back to the ER, but we were instructed to call the surgical resident on call in case of emergencies. After getting him back on track with the pain meds and getting a breakthrough pain dose in, he was feeling relief, so everyone headed back to sleep.

Most of the next day he spent feeling nauseated, in great pain and able to eat very little. Dan tried hard to get him to eat something so he could keep his pain medication down. He had a lot of difficulty walking around and standing up straight. He was downright miserable. The next night, more pain, only this time a burning sensation inside and out. I had pain that mirrored Cayden's. Again, a phone call to the surgical resident on call assured us there wasn't an urgent need to get to the hospital, plus the following morning was the first of Caydens twice weekly blood tests to monitor all of his levels.

Wednesday the 5th, Cayden had his blood draw early in the morning. At 11, we were scheduled to meet his Social Worker, Denise, in the lobby of the hospital to view the liver and spleen that were removed from him on surgery day. Little did we know that just in doing this, it would be too emotionally overwhelming for him. When we got to the pathology lab, they uncovered Cayden's spleen and liver. They were cut crosswise already. It was the strangest thing to realize that those were the organs that had been inside his body. The spleen was huge, but so was the liver. Cayden immediately asked to be wheeled away into the hallway. It was just too much. We took some photos, but out of respect for Cayden and his feelings, I've chosen not to post them right now.

On the way back, Dan received a phone call from Cayden's transplant coordinator, Carmela, who said a couple of Cayden's blood levels were elevated and they were ordering an immediate ultrasound to check for fluid in his abdomen. Before they had released Cayden from the hospital, they had clamped off Cayden's abdominal drains, which I couldn't understand, since they kept mine in to make sure my small bile leak had fully repaired itself.

After waiting forever in the ultrasound waiting room, Cayden was finally taken back with his stepdad, Rob. Poor Dan had stepped out to use the restroom and a code red was called at the hospital, locking all of the doors, so he couldn't get back in for awhile. And there sat poor me in the wheelchair...tired and sore, ready to go back home. Dan finally made it back to the waiting room and discovered that the ultrasound showed fluid inside. They now wanted Cayden to go back to the Intevention Radiologist for a procedure where they were going to inject dye into Cayden to see if the leak was coming from one of the two (unusual to have two bile ducts in the right lobe of a liver by the way) bile ducts now inside Cayden. He found out that Cayden was going to be re-admitted and that it was going to be awhile, so much to my relief, he ran me home and headed back to the hospital to be there for the procedure.

After several hours, they determined there was indeed a bile leak and the fluid needed to be drained. As Cayden was returning from his procedure, we got word that Angie's mom (Cayden's grandma), had just passed away back in Washington. Fortunately, Angie had already returned to Washington on Sunday after hearing her mom had taken a turn for the worse. I can't even imagine having to leave your recently transplanted son at a hospital in California to go home to be with your dying mother in Washington. My heart aches for her. Talk about a difficult two weeks.

With a new drain in Cayden's sternum, the surgical resident ended up draining an awful lot of fluid out. It didn't take long before Cayden's extreme pain subsided and he was left with the "normal" surgery pain that we've both experiencing since the 26th.

Thursday the 6th, was my first post-op appointment with the surgeons. One of my biggest concerns was that I was experiencing a HUGE amount of fluid retention in my abdomen, hips, rear and legs. You can't even imagine how bad it was, well, I guess if you've been pregnant before and can't see your knee caps or ankle bones, you might know what I'm talking about. I was a little concerned about the possiblity of blood clots, so before my appointment they sent me for a complete ultrasound of my abdomen, both legs, and then my liver area. With my abdomen all clear of fluid (the JP drain doing its job well), my legs clot free, the ultrasound tech moved on to my liver. She wondered how long ago I had the surgery...only 9 days. "Which part of your liver did you give?" she said, "Your left lobe?" I told her no, it was my right lobe, because Cayden was fully grown. She couldn't believe it. My liver had already filled in under my rib cage and my hepatic veins were also filling in the area. She didn't think it was possible for it to have grown so much in such a short time. How cool! The surgeon was right...6 weeks to full size. A true miracle. :)

With the ultrasound having taken about 75 minutes, it was back to the clinic for my appointment. I weighed in still 8 pounds heavier than I did on the morning of the surgery. No wonder why my legs were absolutely gigantic! After chatting with the surgeons about my recovery and checking out the incision, they asked about my diet. Was I back to eating normally? I said, "Are you kidding me? I ate 1 piece of turkey bacon, and an egg this morning and could hardly stand it. Nothing fits in my belly!" Dr. Bonham, one of my surgeons, told me that I needed to be eating TWICE as much as I would normally, in other words 3500+ calories a day and greatly increase my protein intake to regenerate my liver tissue, heal and rid my body of this excess water retention. Holy frijoles...there's no way on this planet I can fit that much food into my belly. I feel like I am going to explode after just a few bites! He suggested milkshakes, Carnation Instant Breakfast, and Ensure. Ok to the first two...no thanks on the last one. Afterwards, we were sent to the lab for a blood draw and to have them take some of the fluid from my JP drain to make sure my bile duct had sealed itself over. Once we got to the lab, however we found out that they do not take the fluid samples there, just the blood draw. Anyway, long story short after 1 1/2 hours we swung by to see Cayden to discover he now had a urinary infection they were having to treat with antibiotics and he was sleeping. We finally left the hospital still without the fluid sample taken, and me tired, overdue for my pain meds, hungry and grumpy as heck. At least I got that chocolate shake on the way home!