Wonder Woman, Vol. 3
Wednesday morning I did not have a "pleasant" encounter with a freight train from our northern neighbors, luckily...for them. I got to the hospital in plenty of time for the morning doctor/pulmonology teams round. When Rima was in the hospital for three months in the winter I would not dare to arrive to her room before the hour of 11am, due to her trying to sleep at that time. Sometimes I would even wait till 12:30pm before showing up if I was coming from home and not sleeping over. Those days were long gone. The team wanted her up and at it by 8am and if she had to take a nap make sure it was under 1.5 hours. The days of laying in bed and napping as much as she could were over. My goal was to be at the hospital by 8am every day and stay for as long as I could. The new life of up and at 'em had arrived at Rima's station.
Our mom flew in that morning from Boston. She took a Lyft from the airport since I was unable to leave the hospital. Going pee was even a nuisance for me. I left once to get coffee for five minutes and missed someone from one of the multiple teams; surgical, pain, nutrition, pulmonary, IR, etc. You get the point leaving the room was a recipe for me missing someone and something important. Rima was still in a lot of pain and discomfort. Talking was painful and took a while to get a whole sentence out. Since she was unable to take real deep breaths the first few days of her talking was in a low whisper and take short shallow breaths after every couple syllables.
When I arrived on Wednesday morning Rima was in a lot of pain and discomfort. So much so that she looked super out of it. They were trying to get the pain under control but the trick is to get ahead of it, because playing catch up can set you back a day or two depending on the staff and the pharmacy. The doctors said that they were going to pull two of the chest tubes out that day. YAY! They said the top left and right lung chest tubes had put out under the max amount of liquid, so it was good to go. Our mom arrived at the hospital and came up to Rima's room. Rima was pretty out of it when she walked in it was a bit concerning. She barely had a reaction at seeing my mom for the first time since early August. Her eyes were pretty glazed over and her forehead was furrowed in pain. She acknowledged her but just barely. Rima communicated through not so many words that her back was on a level 12 of pain.
Pain management, it's a very tricky thing. Rima has a high pain tolerance probably higher than most people. I'm sure anyone who has CF has a high pain tolerance. So when she says her pain is at a 10 then that means it's like a 15-17. When she said it was at a 12 code for 911 pain. It was so hard to stand over her and see how much pain she was in. It wasn't even the chest tubes or the huge incision across her mid body. It was her back due to how she had been positioned during surgery, the back catheters and them missing a couple times and the stress and knots from all of this. I got her to sit in a chair mid to late morning. The more she sat up and the more she walked the better everything would be.
A big concern with post lung transplants is the risk of infection in the lungs. By not moving around liquid can settle in the lower lungs. With liquid not being used up by the body like through movement or intake of proteins it just sits in the lungs. This means chest tubes stay in longer, which the longer something like that stays in the more prone to infection it can be. Also by not moving around and getting the liquid to drain or move or be absorbed it can be a high risk for the lungs to get pneumonia. So even though Rima may have been in a lot of pain and discomfort and exhausted it was my job to be the bad cop and make her sit or stand or move as much as possible. I'd rather get yelled at and get shade thrown my way than to hear the word "pneumonia" come out of the pulmonary teams mouths.
At around 2pm a PA from the surgical team came in and began to prep to pull out two of Rima's chest tubes. The process of getting everything set is quite the delicate dance. Lots of clamps, gauze, tape, disinfecting, etc. Rima had just gotten like 3 different pain meds and was hitting a wall. She could barely keep one eye open when the PA was prepping her. I was watching him like a hawk. I had also grilled him the day before in the hall about his process. Why would I grill him? Well, I had read a few stories of people getting their chest tubes pulled out and it not going well. Either from getting an infection in the hole after the tube was pulled out because the proper technique was not used. Or internal bleeding or things getting pulled out. Now I know a lot of these are few and far between horror stories and the exception and not the rule. But I was going to make sure the person pulling Rima's tubes knew I knew what was what. I did throw in some jokes so he knew I was not completely crazy.
While he was working I took multiple photos and videos. I knew we would want all of it later and especially since Rima was so out of it. My mom was grabbing us lunch at this time. It was probably the first time I was having a full solid meal and not just coffee and a power bar in days. After about 15 minutes of clamping the other chest tubes, cutting and shortening tubes and sterilizing the area he was ready to pull. He had Rima practice breathing deeply in and out a couple times and then on the third deep breath and exhale he pulled it out. Rima said she didn't feel a thing. He then dressed the wounds and said that he would be back later and tomorrow to check on her. He passed my bulldog watch test, nurse bean approves!
Rima had quite the morning from very intense pain to being out of it and being two chest tubes down. Unfortunately this all meant that going on a walk had taken the back burner. She had finally regained some of her consciousness and was able to enjoy some time with our mom. I had her do as many breathing exercises as she could stand and sit at least 3-4 times that day for an hour at a time. I also did sitting leg workouts with her that was given to us by her PT team. Rima such a champ followed all my requests even though I'm sure it was hard and painful because she knew it would be good for her. Trust even in a time of great pain is very important. No bedpans had been thrown my way...yet.
The next day Thursday was better all around. Rima was still in a lot of pain and discomfort but not like the day before. Unfortunately there had been a miscommunication about her G-tube. Rima was scheduled to start round the clock tube feedings that night. She needed the nutrition bad, since she was not eating basically anything, other than a spoonful of applesauce the day before. But when the bandages were taped on her stomach by the PA the day before he covered her G-Tube. Anticipating the need of her nurses having to access the G-Tube I had the PA mark where it was located and also where her hole was where the tube was pulled. I had also spoken to two nurses about this and that when the night nurse came on to let them know. Everything was communicated except for one vital part.
Rima in all her drug cloud and pain and discomfort either did not hear this or forgot. She told her night nurse that the G-tube was covered and that she did not want them to look for it. So she didn't get feedings overnight. This was a bit of an issue because she had basically no nutrition in her body and at this time is was key for her recovery and healing especially proteins. I got the ball rolling once I arrived in the morning to have it accessed and to start to play catch up with her nutrition. I was close to throwing a bedpan at her....hahah...just kidding.
At around 11:40am PT came in to take Rima on a walk. After getting all her tubes and wires untangled and finding a wheelchair and a walker she was ready. Just after 12pm Rima was off on her second walk post double lung transplant. Slow and steady was the game. My mom in the back with the wheelchair in case Rima needed to sit or rest. One of her PT people Jacob, next to her. One of our soon to be favorite nurses pushing her IV pole with two chest tubes collection boxes attached and me walking backwards in front documenting and cheering her on. In total, she walked about 300ft, which Jacob said was the furthest he has had anyone walk with him this soon post transplant. Wonder F***ing woman!
After her amazing walk she even sat up in a chair for a while. I gave her a subpar foot rub, I'm not a professional but I try. Later that afternoon she had her chest tubes dressings changes and we got to see the hole where the one was pulled from the day before. Then shortly after 4:30pm Rima the beast that she is went on her second walk of the day! Jacob had her even speed up for a portion of the walk, I even had to speed up my stride so she would stop catching up to me! I said we needed to change our walk names from "roll n' strolls" to "Rima rolls". She walked 600ft!!!! What a badass!
To be continued...