It was nice to see them dance and be able to show my support and just to hang out and visit. Colin picked me up to take me home. On the way we decided we were going to go to dinner for our anniversary. There's a Mexican restaurant Colin wanted to try so we found parking and went there. The food was really good and our waitress was great. After dinner he stopped at Pages and got ice cream for me. It was a nice little celebration. We got home - full of course. I made some tea and went to bed. It was a good day.
Saturday- I was lazy all day. I was tired from Friday's activities. It was a beautiful day so I told Colin I was fine and he could go do something. I feel bad because I can't do the things he's used to doing and I don't want him cooped up all day. He went for a small walk and got out of the house a little bit. I started getting joint pain so it was a little difficult to do anything. I stayed in bed the whole day pretty much. We had leftovers for lunch and I made casserole for dinner. After dinner I went through a couple of the cupboards and packed some stuff up. I did that for about a half hour and then went to bed.
Sunday - Woke up and showered. Colin left to go for a little hike since it was so nice out. I made myself breakfast and then layed back down. My joint pain was pretty bad. I just watched tv for a couple hours. At lunchtime I had leftover casserole. I went back to bed after lunch. I was dozing on and off. Colin came home and I made mini meatloaf, mashed potatoes and cauliflower for dinner. They were pretty good. After dinner I cleaned up and went to bed. Around 7:00 I took my temperature and it was 100.1. I called the transplant coordinator. She said to go to the ER if it gets to 101. We took it again and it was in the 99 range. Around midnight the pain was just awful. I couldn't move at all. Going to the bathroom was torture getting there. I took my temperature and it was 100.1. I layed there for a little while and the pain was getting worse and worse. I yelled for Colin around 3am. He came into the bedroom and took my temp. It was 101.7. He helped me get dressed. We packed a bag and headed to the ER. In the ER they took us back right away. They did the usual blood cultures, urine sample and chest X-ray. They gave me pain meds and called the transplant resident to let them know I was there. Everything on the X-ray was good. The blood cultures take a couple of days so we didn't have answers on those. Urine was fine. My heart rate was in the 120's so they put me on a heart monitor. My oxygen level dropped to the high 80's at one point so they gave me a nasal cannula to help me breathe. The ER doctor came and told us they were admitting me and we were just waiting on a bed. We were in the ER room until 1pm. They gave me a room on the 11th floor where I know and love all the nurses. I got settled and Colin left once he went over all my meds with the nurse to make sure things were scheduled correctly and he was comfortable leaving me alone. I took a couple of cat naps here and there. The nurse was in and out with my meds. The doctor requested more blood work and the nurse couldn't get blood return. She called the iv team to come and take a look at it. In the meantime they had to stick me with a peripheral iv to get the blood. The IV team came and couldn't get a blood return either so she put TPA (a medicine to clear out the line). It takes about 2 hours for it to work. It was 2am by the time everything was done and working. I layed down and fell asleep for about 2 hours and then the nurse came in to draw my labs around 4. I fell back asleep for a little bit and woke up when Colin got there.
Monday- I woke up when Colin got to the hospital. Bill came in around the same time. He said everything on my labs looked good and he checked my face because it's swollen and my jaw and glands hurt. He said they may do a Ct scan of it. He marked the area with a marker to measure how big it is and to see if it changes at all. He also checked my gtube site and said he wanted wound care to take a look at it. He left and about an hour later the team came around. Dr. Cruz looked at the gtube site and agreed with the wound care consult. He said everything was good. My white cell count is extremely low and basically non-existent so I am now on neutropenic precautions so anyone who comes in my room has to have a mask and gown. Hopefully it will start to trend upwards. After the team left I just watched tv. Colin watched a movie. We didn't do much the rest of the day. The wound team came in and looked at the gtube site. The skin around the site is raw and broken because the stomach acid that is leaking out sits there and eats away at the skin. She cleaned the area and fitted me with an ostomy bag. She gave me powder and spray to use on it. Fingers crossed it works. Everything I eat or drink comes out the open site. It's pretty gross and so raw that it burns constantly. She left and Colin headed to the apartment to pack some stuff up. I ate dinner and played on my phone. It was a boring night. I was really tired so I took a couple of naps. I had a restless night but that's pretty normal when you are in the hospital.
Tuesday - Colin came in around 6. Bill came in around the same time. He went over my labs and said everything looks good. My white cell count is 26 so it's on an upward trend. He looked at my face closely and said that the swelling went down a little but they may still do the Ct scan. He left and the team came back around. Dr. Cruz was happy with the upward trend in the white cell count. I'm still on neutropenic precautions. He told us he didn't want to expose me to the Ct because I've been scanned so much so he is just going to treat me like I have cellulitis. They gave me several antibiotics for it. I spent most of the day watching tv. The wound care nurse came back and I told her the bag didn't last longer than 8 hours. She fitted me for a different bag which I'm hoping will work. She said she'll be back tomorrow to check on me. Colin left around 2 to do some more packing. I was getting horribly sharp pains so I stayed in bed. I ordered dinner and ate. It's been a long day and I've accomplished nothing. I am going to get settled in for the evening and go to bed. I hope you have a good night!! I will post more later. Sweet dreams!!
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