It’s Tuesday night and I’m actually writing about Tuesday night. Holy crap! You know what that means! Wait for it! Satomi’s sleeping! It’s only 10:30pm and so far she hasn’t moved a muscle. I’ll try not to jinx it but we’ll see.
I was very concerned as she slept for most of the day. I was told that there were definite intervals of lucid discussion throughout the day.
I spoke to the RN about the incidents last night and she advised me to add a second 25mcg/hr Fentadryl patch to Satomi’s back. Her baseline pain relieve shall be borne by the patches. Breakthrough pain may be attacked with partial doses of Oxycodone as needed.
At bedtime, I was to continue with the typical bedtime therapy of two Ambien, 1.0ml of Oxycodone, and another 1.0ml of Ativan. When combined with 50mcg/hr of Fentadryl, this is a hardcore mix.
Happily, it all works fine…at least for now.
It’s Monday night and I actually believed that things were settling down. I had been keenly warned by all the Hospice staff to be wary and do not take things for granted. They were right. Satomi had another terrible night.
Earlier that day I had met with our RN and spoke of my weekend experiences with Satomi’s bedtime meds. This lady is all business and it is reassuring. We talked of Satomi’s restlessness after receiving her meds and the long time it took for her to actually sleep. I thought it unusual that it took two subsequent doses of the Oxycodone and Ativan for Satomi to sleep. She immediately looked at the medicine bottles. They were mislabeled. Instead of “o.25ml to 1.oml every two hours”, the Oxycodone bottle read “0.25ml every two hours”. I checked the meds order and confirmed that this was true. So I could actually give Satomi a 0.5ml dose at once and likely calm her quickly. A similar error occurred on the Ativan bottle. With that, I was confident that the bedtime meds would be smoother.
At 10:00pm I gave her all normal meds at the new elevated dosages. I watched her for 60-minutes. No change from normal. Crap. After 60-minutes she began her restless but painless sleep. I’d call the RN in the morning.
At 1:00am I was startled to hear Satomi’s voice through the baby monitor. She was grasping her head and moaning “…my head hurts…Sean…” I ran in the room. She was awoken out of a drug-induced sleep. This must be bad.
The RN had also advised me a few basic rules. She said not to play around with pain. If it’s bad, hit it with your strongest med in a big dose to kill the pain fast. Several partial doses can be less effective than a single big dose and the extra time means that the patient will agonize needlessly.
With that in mind, I gave Satomi a full syringe of 1.0ml of Oxycodone. That’s a lot for such a small person. I’m also told that Oxy is two to three times the potency of morphine. Maybe that comparing apples to pineapples but it’s a good enough for us non-medical types. I also gave Satomi a full syringe of 1.0ml of Ativan, an anti-anxiety medication. Based on everything I’ve learned so far, she should be knocked on her ass.
Satomi: “My head….Can I go potty?”
Me: “Nope. You have a Catheter. Just relax.”
Satomi: “Ok.”
15 seconds pass.
Satomi: “My head…Can I go potty?”
Me: “What? No. Just Relax”
Satomi: “Ok.”
Repeat two more times.
She finally lies down and I leave the room but I watch her for the next hour tossing and turning. Her Mom is standing over her bed with moist towels on her head and temple massages. Her Mom looks tired.
It’s now 4:00am. I was started awake again by Satomi’s moans “…headache…Sean…headache…” I get back into the room and calm her down. She’s squirming around in pain. I prep another 1.0ml dose of Oxy and Ativan. Crap. I give it to her and there’s another debate with her about the potty, a catheter, and her pee. She settles down and I return to bed. I keep watching her for what seems to be another hour. Tossing, turning, moist towels, massages, and tired Moms. Somehow I fall asleep.
My alarm goes off at 7:15am. I drag my chubby ass into Satomi’s room and watch her. She’s sleeping like a rock without any pain. A few minutes later I am told she finally settled down between 6:30am and 7:00am.
I contemplate the night’s battle and get ready for work.
Again fair warning! I’m writing this post in detail so you all can feel like you were there with me. If you have a problem with poo, do not read this post!
Kneel down at her feet. Best access for what comes next. Grab a new Depends. Snake the Catheter bag through the right leg opening (as I was taught). Compared to the generic cheap crap the hospice leaves us, these Depends are excellent. I have a new appreciation of adult diapers. The diaper is up to her mid-thigh. We’ll pull it up once she’s not sitting down any more. Can I stand? Yup. I grasp and guide her hands upward. She stands. Pull up the diaper. Reach around and adjust the booty. I stand up. She shuffles back over to the bed. I move the catheter bag out-of-the-way. It would suck if one of us stepped on it.
She turns around. Sits down on the edge of the bed. Baby wipe entire exposed body just in case. Dump wipes. Trash can still very full. Splat. Splat. Gag. Ignore. Grab new sleep shirt from shelf. Head and arms through. She butt-walks back onto the bed. Lies down. Rolls over. Faces wall. Raise head of bed to maximum elevation. No pillows or blankets yet. Cover her with a clean towel. Put up the rail just in case. Hang the catheter bag. I’m cold. Close the window. Grab extra blanket. Cover her. New gloves.
Carry poo stained linens to laundry room. Dirtiest first. Sheet. Liner. Sleep shirt. pillow cases. Rest on the floor. Hot wash/Cold rinse. Oxy booster. Tide HE. Colorsafe bleach. Crap load of softener. Stain cycle. Start. New gloves.
Walk my tired ass back to poo room and take inventory. Satomi sleeping. Poo covered trash can, floor, wheelchair, table legs, carpet, toilet frame and seat. Full toilet pan.
Find clean section of floor and sit down. Gather big chunks first. Too big for wipes. Just grab the meatballs bastards with my gloved hands. Into trash can. Clunk. Clunk. Clunk. Grab hairball-looking poo next. Watery. Drip. Drip. Damn-more spots on the carpet. Good thing it’s not a solid color. Slimy. Splat. New gloves.
Open new Sani-wipe container. Wheel chair first. Poo on the seat, wheels, frame, all the nooks and crannies. This is going to take me forever. Keep cleaning. Keep finding more little chunks. Keep cleaning. Wipe. Wipe. Wipe. Don’t roll wheelchair. Will smash small poo chunks into carpet. Wipe. Wipe Wipe. Table feet next. Wipe. Wipe. Wipe. Keep finding more little chunks. Keep cleaning. Wipe. Wipe. Wipe. Trash can next. Hairball poo stuck on side. Scrape. Drip. Drip. Scoop. Splat into trash can. Wipe. Wipe. Wipe. More wipes. New gloves. Clean the carpet. Blot. Blot. Blot. Scrub. Scrub. Scrub. Wipe. Wipe. Wipe. Damn spots. Scrub. Scrub. Scrub. New gloves.
Toilet frame is next. Seat lid top. Wipe. Wipe. Seat lid bottom. Wipe. Wipe. Seat top. Wipe. Wipe. Seat bottom. Wipe. Wipe. Arm rests. Wipe. Frame. Wipe. Must empty poo bucket now. Wipe handle. Lift poo bucket. Carefully carry to Master Bathroom. Add extra water into bucket. Carry to toilet. Lift seat. Preflush toilet. Dump full poo bucket into moving water. What the hell? The water is rising. Poo water is almost to the rim of the toilet. This is not frickin happening. The poo gods must be laughing their asses off. My damn toilet is backed up an inch from the rim. Shit. Shit. Shit. Walk to the laundry room. Find a gallon of industrial drain cleaner. Carry back to the plugged toilet. Skim instructions. DO NOT USE IN TOILETS. Screw it. Dump the whole gallon into the poo goop. The toilet is filled up to the tip top. Walk away and ignore the problem. Return to the cleaning. New gloves.
Put the bucket into the frame. Scrub the bucket and the rest of the toilet frame. Wipe. Wipe. Wipe. Scrub the floor surrounding the toilet. Wipe. Wipe. Wipe. Room is looking much better. Smells like cleaning solution…and poo. New gloves.
Move washed linens to dryer. Add bounce. High temp. Max dry. Start. Load the rest of the poo linens in the washer room. Blankets. Warm wash/Cold rinse. Tide HE. Crap load of softener. Extra Rinse. Start. New gloves.
Back to Master Bathroom. Did the drain cleaner work? Nope. Not at all. Did the water level drop? Not at all. What the hell? I bet all those flushable wipes aren’t so flushable. Stick a toilet brush into the chemical poo goo. Careful. Don’t splash. Yup. Clogged with wipes. Stir. Poke. Stir. Poke. Stir. Poke. SPLOOSH! Nice. All my troubles down the damn drain.
Back to check on Satomi. She’s fine and dozing. Rooms looks good except for the washing linens. I sit on the floor and look around. Be fine in another hour or so. Things look good. 7:00am. I can sleep for another 30 minutes if I don’t take a shower. Hmmm.
Satomi rolls over, “Sean…can you help me. I have to go poo…”
Damn.
Fair warning! I’m writing this post in detail so you all can feel like you were there with me. If you have a problem with poo, do not read this post!
Sleeping soundly. The baby monitor next to my exhausted head erupts with Satomi was yelling my name. I throw myself out of bed and run to the other room. I’m far from awake. What the hell? What time is it? 6:00am and the sun is just coming up. I have a stress headache.
The Milk of Magnesia laxative worked and worked well. It looked like the bottom of her underwear exploded. It was everywhere-on the sheets, on the liner, on the blankets, on the pillow, on Satomi’s night-shirt, and her legs. Seriously, a poo IED just went off. For a solid 5 seconds, I stood there in poo shock. Satomi yelled my name again and I was pulled back to reality. Oh shit. I need a plan. And a crap load full of supplies-wipes, diapers, liners, and about 1,000 pairs of gloves. What a way to wake up on a Sunday morning.
How do I get her off the bed without further squishage? I won’t. Screw it. Sit her up and slide her to the edge of the bed. Squish. Smear. Yukk!!
How do I get the diaper off without big chunks falling on the floor. Don’t forget that Satomi needs to be standing when this happens. Crap. We can do it. Tear the tabs off the diaper and let it flop. Put multiple layers of liner on the floor. Take off her sleep shirt and toss into the corner of the room. Hold both hands and stand her up. Slowly. I hear a squishy noise. She’s standing and fairly stable. Let go with my left hand and cup the heavy part of the diaper. Give it a tug and the I feel the full weight of it in the palm of my hand. Wow. That’s heavy. Pull it away slowly. Drip. Drip. Glop. Glop. That floor liner better work. Turn and toss the diaper into the trash can. I should have put the can closer to the bed than to me. The angle is awkward and my throw is about 6 inches wide. Splosh. Gross! Chunks on the carpet, on the wheel chair, on the table legs, on the side of the trash can. Friggin great. Satomi is still standing. She needs to sit on the potty. Wait. Don’t move! Don’t step on poo! Pull the chunky floor liner away from Satomi’s feet. Crumple and throw into the trash can. I correct and my aim is right on. Ok Satomi, let’s keep shuffling over to the potty. The 12 inches between the bed and the potty seat can be far for her so I keep spotting her. With only my right hand. The left one is covered with poo. Shuffle. Shuffle. Drip. Drip. Glop. Drip. Shuffle. Shuffle. Turn around. I move the potty so it is lined up with the booty. Ok Honey, sit down. Sit down. You can sit down now. Sit down. Feel free to sit down. Uh. Sit down. I move my right hand down and she gets the message. She sits down. Squish! Bullseye! Yukk. But she’s safe and stable.
New Gloves. Stock pile baby-wipes and sani-wipes. Line them all up. Satomi’s can’t sit on the potty for long. Her spine hurts. Double time! Remember to use the flushable baby wipes-Not the Lysol sani-wipes. Wipe down everything on the top side of her body-front part of the legs, shins, calves, feet, hands, arms, torso, upper back. New gloves. Change over to the Lysol sani-wipes. So happy I got the big Costco pack. Wipe the bed handrail and exposed frame, the potty frame. New gloves. Pull the sheets, blankets, pillow cases, and liners. Throw into the corner. My back hurts! Crap. Faster. I need to stand up. No don’t stand up. New gloves. I write a note: “Don’t stand up!” She reads and nods. Replace the sheets. I need to stand up. No. Replace the liner. I need to stand up. No. She stands up. Shit! Drip. Drip. Damn! Sit down! She sits down. New gloves. Back to baby wipes. On my knees next to the potty. Most booty access from there. I need to stand up. Ok, stand up. She grasps the potty rails and stands up. Drip. Drip. I spot her hip with my left hand. Right hand starts to wipe and wipe and wipe and wipe. Her knees are shaky. I need to sit down. Wipe the potty seat. Shift into top gear. Wipe. Wipe. Wipe. I need to sit down. Wipe the seat back. Wipe. Wipe. Wipe. Suddenly she bends at her waist and touches the floor. What? I stop wiping. How the hell did that happen? She’s still standing but she’s bent at her waist and her head is down near at the floor. Seriously. What the hell? I’m still holding her hip. She’s still talking. I need to sit down. Guide her butt back onto the seat. She sits. No drips. No squish. Amazingly, no headache.
I catch my breadth. New gloves.
Athough I was very frustrated earlier, this evening turned out well. Satomi is sleeping with on a minimal amount of restlessness. The improvement is due to a dose of Oxycodone administered an hour befor bed time.
Honestly I am very concerned about Satomi’s bowels. She’s already taken three doses of laxatives and drank a lot of water. So far no luck. I guess that will be for tomorrow.
Her pain regime today was light. She had a few instances of headache pain but most subsided without pain-killers.
Satomi had several guests today and tomorrow is a similar story. I’ll be sure to monitor her energy level.
I’m alone on nightshift tonight but if things continue, with any luck, I can take a shower in peace.
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