Page 55 of Inherited Light
"I'm confused about what’s going on, honey. Your tears are breaking my heart. I didn’t think saying I love you would make you cry," I said, swiping the hair from her face.
She lowered the cup. “You say you love me, but I know it can’t last. The tears fall when I know I’m going to lose another chance at a normal life. I can’t do this anymore, Ren. I can’t.”
She was shaking and the tea sloshed over the rim of the cup as I took it from her hand. I wiped off the hot liquid and kissed the spot, then held her hand against my chest, using my other hand to rest on her chest. She was crying again and her whole body was wracked with a jumble of anger, pain, and sadness. I leaned over, pulling her to me and kissing her temple.
“You’re not going to lose me, sweetheart,” I whispered. “I’m not like all the other guys before me. Haven’t I proven myself to you by now? All I want to do is understand what you’re dealing with. I want to make your life a little bit easier for you, but I can’t if I don’t know how.”
I released her, lowering her back to the bed until she rested on the pillow again. She wiped her eyes, but held my gaze. “What time is it?"
I checked the clock by her bed. "Almost seven. Why?"
Her shoulders sank and she motioned at her chair. "I have to go to the bathroom. I guess now is a good time to clear up your confusion about my physical and emotional reactions."
I grabbed the frog leg of her chair and tugged it over, locking the brakes so it didn't slide away. She struggled to sit up, but the pain must have been too much and she sank back into the mattress.
"Here, let me help," I said, holding the button down to raise the head of the bed until she was almost upright. I gave her my hand and she hoisted herself up to a sitting position, still splinting the left side a little bit. "I'm not sure you're going to be able to sit in the chair straight up and down."
She gritted her teeth together. "I can do it, if you can help me swing into it."
I helped her in a very awkward movement of me lifting and her pushing herself off the bed. She weighed nothing, and I could have carried her, but I would have to do this her way if I wanted to understand her situation. She did let me push her to the bathroom and once she was in the room I turned to leave.
"You should stay and everything will be clear for you."
I forced my expression to stay neutral when she asked me to get her a washrag and an alcohol swab. I did what she asked, and held them while she lifted her shirt. There was a tube taped to her abdomen.
"The reason I'm running a fever," she explained, "is because the skin around my catheter must have gotten infected at the hospital the other night. I noticed it was sore, but wrote it off as being from the fall. Today, when I showed Foster, he cleaned it and stopped the bleeding of the raw tissue underneath, which is all the hospital would have done."
She took the washrag and alcohol pad from my hand and set them on her leg, then took a small syringe from a basket near the toilet. She held up the alcohol pad. "I use this to clean the valve insertion site so I don't introduce bacteria into the tube. Some people say it isn't necessary, but it's a simple way to make sure I don't get sick."
I nodded acknowledgement as she worked, rather than speak and break whatever blessed spell kept her talking.
“Some people use a bag for their catheter, but I use a valve, it makes it easy to keep one in my purse for when I'm at the gallery or out on the town. I need to empty the catheter every three to four hours except at night. Sometimes, if I'm particularly tired or I'm sick, I will hang the night bag on the bed and connect it through the port, but usually I empty before bed and immediately when I get up and have no problems. Sometimes though, if the bladder gets too full it could leak out during the night and make a mess."
"Leak around the tube?" I asked.
She lowered her pants enough to clear the tube the rest of the way. I noticed the catheter wasn't in her urethra but coming out of her abdomen much like Cinn's feeding tube does. It sat lower though and had a longer tube versus Cinn’s small button.
"No, this isn't the kind of catheter you're thinking of. It’s called a suprapubic tube catheter and goes directly into my bladder. Unlike an indwelling catheter this allows me freedom to live my life with less infections and no urine bag attached to my leg."
She had the valve connected to the tube and rolled to the toilet, opening the bar on the side so she could come up alongside it. "All I have to do is open the valve," she explained as she spoke, "and hold it over the toilet allowing the urine to drain from the bladder."
"And you don't get infections with the tube catheter the way people do with the other kind?"
She nodded since her hands were busy. "If you mean bladder infections then yes, that's the reason I have it. I also have it because I still have some sensation in my pelvic region. If I have a catheter draining continually the nerves in my bladder will slowly die, and I'll lose what little feeling I have."
"If you can feel your bladder why do you need the catheter?" I asked.
"Good question," she answered extremely clinically as she used the washrag to hold the valve once she closed it off. She threw the valve and the rag in a small basin. "I can feel pressure and pain. When my bladder is full I get a partial sensation of fullness. If I were to have an infection I would feel the pain before I drained the bladder and found blood. What I can't do anymore is control the muscles enough to empty the bladder without help. I could have done intermittent catheterization through the urethra every three or four hours, but since I’m in the community as a businessperson, I didn’t want to deal with it any longer than necessary because of infection and inconvenience. This type of catheter allows me the most freedom while still doing the job I can no longer do without help. It also allows me full freedom for sexual activity." She blushed, but pointed at the medicine cabinet. “Would you get one of those rolls of tape from there?"
I took one down and handed it over, watching her struggle to cut the piece off with her teeth, but I left her to struggle, inherently knowing if I offered to help, she might decide to stop telling me about her illness. She finally got the piece off and carefully taped the tube flat against her abdomen, giving it a little bigger loop because I could see the skin around the tube was red and probably sore. She backed the chair up and rolled toward the sink, so I stepped away. She washed her hands carefully, under her nails for a full twenty seconds, then took a towel and dried her hands before she turned off the faucet with the towel. She opened a drawer with the towel and took out a glove, which she snapped on her right hand. Next, she took a tube of ointment and squeezed some on her finger.
She held it up. "This ointment has topical anesthetic in it. When I put it on the inflamed skin it takes away the burn," she explained as she rubbed it around the reddened area, but not directly on it. She tossed the glove and took out a round, cotton pad. "Cinn showed me these. She told me Foster bought her some the last time she had a problem with her feeding tube."
"Yeah, she had a bad infection around the port site," I said pointedly. "After the doctor repaired the stoma he suggested she put tape over it so it didn’t get damaged when she directed the band. She hates the tape, so Foster found out about those and bought her some. Does Cinn know you have a catheter?”
"No, she mentioned these one day when we were talking about cool gadgets they have for disabled people. I did a search online and found them immediately. Since they have the slit and the snap already built in, I bought some and hoped it would work the same for the suprapubic tube as they do for the feeding tube."
She unsnapped it and slipped it around the tube then snapped it again. "Like a charm," she said.
