After I was discharged from the hospital, my parents took me to our hotel nearby. The ten minute car ride to the hotel was uncomfortable. Every turn, bump, acceleration and stop was a little painful. I wore a nightgown with sneakers and I had a travel catheter strapped to my leg. They dropped me off at the side entrance of the hotel. The walk to the elevator and then to our room felt like the longest walk of my life. The nurse did not strap the catheter properly on my leg. Both catheter straps fell off my leg while I was walking. My mom helped me get to the room. I was exhausted when we finally made it to the room. I had been awake all morning waiting to be discharged and I desperately wanted a nap. My mom switched the travel catheter with one that did not strap to me. Since the catheter had to stay lower than my bladder, we hooked it to a suitcase with wheels. Whenever I got up, my mom rolled the suitcase behind me. My bladder was leashed to the suitcase! It made it difficult to move around, so I didn't walk near as much as I should have walked.
I was almost fully dependent on my mom and dad while we were in the hotel (Thursday-Tuesday). My dad left to go back home on Saturday (12.09.17). I wasn't strong enough to get up without assistance. The suitcase holding the catheter was too heavy for me to pull. I didn't have enough hands to empty my ostomy pouch into a measuring cup to track my output before dumping it down the toilet. We had to measure it for my follow-up appointments. I couldn't bend over to empty my catheter nor could I bend over to put on socks and shoes. I could empty the JP on my own, but I couldn't hold it and shower at the same time. My parents didn't make me leave the hotel, which I appreciated. They went out and brought me back food for each meal. They stepped up to take care of me and I'm thankful for that...even if I am a little worried how my mom will try to hold her good deeds over my head in the future. Throughout my hospital stay and hotel stay, I consistently thanked my mom and dad for everything they were doing for me. No matter how frustrated I got with the nurses, hospital, fevers, my delayed discharge, and comments my mom made, I didn't snap at my mom (or anyone except for the nurse that day in the hospital they wouldn't let me eat or drink when I demanded the nurse to bring me some fucking water). I didn't complain to my mom about any of it. Instead, I slept off my frustrations and I know that even annoyed her at times. I did the best I could and I think she did as well!
The hospital beds were adjustable and I didn't lay flat while in the hospital. The flat hotel beds were hard to get comfortable in. I could only lay on my back because it hurt to lay on my sides. I slept my life away as much as I could with my loud roommates (my parents), the construction in the next room, and the maids. The days kind of all blur together. While I was glad to be out of the hospital, it didn't seem like I made much progress while I was in the hotel. Pretty much all I did was sleep, eat, go to the bathroom, and talk on the phone. Almost every time big sister Lynn called, the maids were vacuuming (lol). I managed to avoid visitors at the hotel. I just didn't have the energy for it. I slept a lot, but I never felt rested.
Around 5am on Sunday morning (12.10.17) the urge to urinate woke me up. I woke my mom up and she helped me out of bed. She wheeled my catheter behind me on the suitcase to the bathroom. I sat on the toilet and peed into the toilet!!! Apparently, I peed around the balloon inside my bladder that was keeping the catheter in place. I freaked out! I messaged my nurse friends to get their input and I called the Cleveland Clinic. At the advice of Cleveland Clinic, I found myself in the ER. My mom was on top of her care giving game because she helped me get ready and get to the ER in a hurry. I was in the ER for two hours. All they did was flush the catheter line. Basically, they injected saline or something into my catheter tube to fill my bladder, which felt absolutely terrible. It really made feel like I had to pee. Somehow the catheter bag started collecting urine again and the feeling to urinate faded, so I guess it worked. The ER nurse gave me additional syringes to flush the line on my own, if needed, and discharged me. Not even 30 minutes after we got back to the hotel, I had the urge to pee again. I peed in the toilet again. I was determined not to go back to the ER. Flushing the line didn't seem to work, so I wasn't going to use the syringes the ER nurse gave me. I peed around the balloon inside my bladder that kept the catheter in place throughout the day on Sunday. It wasn't pleasant. I told myself that I only had to make it one more day with the catheter, so I suffered through it.
On Monday (12.11.17), I had a follow-up appointment for a CT Cystogram. I was excited when the results came back okay because that meant they could remove the catheter. I knew having the catheter was difficult to tolerate; however, it wasn't until it was removed that realized just how awful it was. The nurse told me that I had 6 hours to pee. Little did she know that I was peeing in the toilet throughout the day the day before. I peed soon after getting back to the hotel. It was a lot easier to move around without the damn catheter. I was no longer leashed to the suitcase! On Monday night, I changed my ostomy for the first time by myself. It actually went well!
Tuesday (12.12.17) was my last round of follow-up appointments before I could finally go home. I had the JP drain removed. Perhaps the most pain I experienced during this whole adventure was when the nurse cut one of the stitches holding the JP to my skin. It felt like she sliced my skin. I saw stars! The nurse pulled...and pulled...and pulled the tubing out of my body. The tubing inside me was over a foot long! As the nurse put a bandage over the opening she explained that it's normal to be able to see down into the hole in my body where the drain was until it starts to heal. I was instructed not to put anything into the hole (lol). After the I left the JP nurse, I went to see my ostomy nurses. They examined the pouch I changed myself and said I did a great job. Before I knew, one of the nurses had removed my ostomy (she made it look so much easier than when I did it the night before) and the nurse confirmed that my stoma and surrounding skin looked healthy. The ostomy nurses talked, but I zoned out. I don't know what they said. At this point I was ready to go home. They put a new ostomy pouch on me, asked if I had any questions, and then sent me on my way. After two weeks away, I was finally going home!
My mom drove me home. The three and half hour car ride home didn't pass fast enough. I went straight to my bedroom to put down some stuff and take off my shoes. I had a hat on and must have been looking down because I didn't notice the welcome home decorations, cards, and gifts until I went back into my room after going to the bathroom. A huge shout out to everyone that's supported me through this, thank you! Your phone calls, text messages, sweet cards, well wishes and prayers, gifts, flowers, and donations were more than I could have ever asked for. You guys are all amazing!!! You definitely helped make it easier for me to get through this.
Here's the link to the GoFundMe page my best friend set up: https://www.gofundme.com/laurenfightsback My surgery and hospital stay has been billed at over $100,000! I'm still waiting for that amount to be adjusted for my insurance plan discounts and amounts paid by my plan, but the thought of receiving these bills in the mail is intimidating. Any help would mean the world to me!
I hope my family and friends can count on me, too: https://youtu.be/Yc6T9iY9SOU
