Hospital Update #1

Since the fourth of July I've had this back pain along with some belly pain that's kept me up at night and made regular activities rather difficult. I made it through youth conference all right, and then was okay during the three-hours of Church on Sunday, so we assumed I would be okay on the trip to Nauvoo that would start on Monday. So here's the story of what's happened over the past week:

Monday July 13th: We were all packed and ready to go to Nauvoo so I was going to stick it out with my current back pain which wasn't horrible. We spent five hours in the car - the pain spiked once really badly, but it quickly went back down to a more stable and tolerable level. When we arrived, my pain began to spike again and it wouldn't go down. We visited with Grandma and Grandpa Hyde for a bit (they're serving a six-month temple mission in Nauvoo) and went down to the visitor's center to see one of the shows that the performing missionaries put on. After the show, my pain was again spiking (this whole time I was carrying a lime green squish pillow that Rachel so generously gave to me that helped the pain in my belly a bit) so Mom and Dad figured out where the local hospital was with the best emergency care: Keokuk Hospital. We drove there while the kids hung out with Grandma and Grandpa and Mom checked me in. While we were sitting there not feeling very good about our decision, this lady came out saying, "He's such a quack. He shouldn't even be a real doctor." That pretty much solidified our decision for Dad to drive me the six hours back here to my regular hospital, Children's Memorial. We ate dinner with my grandparents before we left, and it was nice that we had everything we would need (toothbrush, toothpaste, underwear, etc.) for a long hospital stay. On the drive we listened to my iPod until it ran out of battery and watched Eight Below (a very intense movie that is guaranteed to keep a driver awake even if he can just hear the sound) and had some pretzels and sunflower seeds. We arrived at the Emergency Room at about 1:30 in the morning.

Tuesday July 14th: I got rushed in to the ER since I'm a transplant patient and I got a nurse, Katie, who had been working in the OR where I had me biopsies done. So I got my port accessed painlessly and they gave me a dilaudid bolis (a big dose of a heavy painkiller) which pretty much knocked me out for a while. They took an x-ray which was very painful because it hurt to lay flat and I had to lay on this hard metal table with no support whatsoever. They also did an ultrasound of my abdomen which was fairly painful as well because of the belly pain I had been having. Eventually we moved upstairs to the fifth floor around 8 or 9 in the morning to the room I have always been in: room 517. They got me drinking some contrast for a CT scan which I had later in the day. That was a bummer because they had to give me a second IV for their special contrast and then I had to lay flat, but at least they attempted to make me comfortable. That was pretty much our day.

Wednesday July 15th: We received CT scan results which showed some swollen lymph nodes in my abdomen. They decided I needed a laparoscopic biopsy to test one of the swollen lymph nodes to figure out why they were swollen. The laparoscopic biopsy would be minimally invasive as opposed to a major surgery where they would cut me open. We met the surgeon and anesthesia people that would be doing the procedure, and they all seemed really nice. Dad left later in the day to go home to meet Mom and the kids who were in a rental car that needed to be returned. Mom came back to stay with me.

Thursday July 16th: Since I was an add-on surgery, my biopsy didn't start until 11 am. I was STARVING by that time since I hadn't been allowed to eat anything since midnight. I took a bath before the biopsy, and a massage therapist came by so I got a really nice foot massage; both helped ease the hunger. :-) I pretty much recovered all day long - some doctors came by to check on the incisions but that's it. The lymph nodes are really close to this nerve called the celiac plexus which stretches from the back to the abdomen - which explains the back pain. We started Lyrica - a pill used to treat painful nerve diseases. Mom stayed on that night.

Friday July 17th: Today started the days of waiting. And trying to find ways to fix my pain, or at least get it to a tolerable level, so I can go home soon! We started these Lidoderm patches which have a certain amount of lidocaine in them so they kind of numb the area. I've been keeping them on for 12 hours during the day, then I have to take them off for 12 hours at night. They seem to be helping a TON. We also began decreasing the continuous flow of dilaudid (the painkiller) that I've been getting through the PCA pump. The pump has me on a continuous flow which is being decreased and a demand amount that I can get when I push a button. We had another old nurse, Susan, who is so little and full of energy! Dad relieved Mom that night.

Saturday July 18th: Another day of waiting...or so we thought. Nothing usually happens on the weekends, so we expected to just hang out and continue with helping the pain and getting stronger. However, one of the doctors came by and told us that the preliminary results, which turned out to be very official, showed signs of the cancer I had three years ago - PTLD. Post-transplant lymphoproliferative disease. Just in case you were wondering :) To add to the depression of the day, I announced that I would not be going to Utah on the 22nd and that my EFY was also cancelled. I did walk 7 laps around the floor which was an improvement from half a lap the day before. My siblings came along with Mom to pull me up out of depression for a while. We played a bunch of games and ate dinner together in the tiny room that has the microwave. I actually got to go since I'm not in isolation - it's been great because I've never really been able to go to the acitivities that they have on the floor because of isolation. It's also fun to be able to see everyone's faces since they don't have to gown up or wear masks anymore! Anyway, they stayed for a several hours and went home with Dad around seven.

Sunday July 19th: Yet another day of hanging out. Mom and I went to the Brown Family Life Center which is a play area on the floor with movies and games and computers, etc. We saw some cute dogs that came to visit and worked on the computer for a bit and explored the room off the center called the Teen Lounge that had a TON of movies (including National Treasure!!) and lots of games that were in much better condition than the ones that smaller kids have access to. We came back to the room loaded up with Scattergories and a couple of movies. I made a calendar to track what we've done each day (the only reason I can remember everything that I'm reporting). We began using a second lidoderm patch to cover more spots on my back to help the pain, and we decreased my continuous pain med again. We called family to report and took several walks around the floor. We read our scriptures and had a very nice Sunday.

Monday July 20th: So I'm still bummed about missing my Utah trip, especially as the scheduled day draws nearer, but there's really nothing I can do about it. So I'm trying to stay positive. We had a pretty eventful day today, actually. Transport picked us up around 7:15 in the morning to take us to Northwestern - the adult hospital nearby that has the PET scan equipment. The scan went well, though it was a little painful to lay flat again. Once the transport team got me and my mom situated in the ambulance to go home, the ambulance wouldn't start. They tried to use the jumper cables with their portable battery, but they had no luck. So they asked a security guy to bring his car around so they could try to use jumper cables with his car. Mom was taking pix of the whole event, but when she took a pic of the security guard (only his backside) he whirled on her like she was some sort of criminal. She was like, "um, I'm just the mom. Just taking some scrapbook photos." He seemed a little annoyed but he just said, "I was going to call for back up. There have been some weird things going on lately." Of course, Mom and I found this whole thing to be quite hilarious and typical of something that would happen to us. The ambulance eventually started and one of the nurses that was with us felt so bad that she bought us lunch from this delicious Thai place. Once we got back to the hospital, it was past noon, so we ate lunch and then this lady came in with a TENS unit. There are four stickers that you put where you're having pain and they hook up to this machine that makes a little tingling that feels kind of like a massage. You can set it on different modes and one of the modes releases endorphins so it helps the pain for a few hours after you take it off. I tried it on this setting first for a while and it put me right to sleep! I must have placed it near a nerve that activates that part of the brain, or something like that. So I slept until about five and when I woke up we decided to watch National Treasure after a walk and a bathroom break. Dinner was leftovers from when the kids had come to visit which was delicious! We also decreased the continuous dose of painkiller once again. I might be able to go completely off of a continuous dose tomorrow!

So that's what's been happening so far. It's ten at night on Monday and Mom and I are heading to bed soon. Thank you for all of your prayers and fasting for me! They have been helping and a miracle will happen! I love you all! I'll try and update this daily, but it depends on if the internet here works and if I can get to a computer. Dad's supposed to bring our laptop tomorrow, so that should make it easier. Anyway, have a wonderful day, smile and be positive!