if you want to know what this life is like, the next ten minutes or so capture it as well as anything. i haven't gone to sleep yet because the night has been filled with anxiety, caregiving and trips down the hall to the washer dryer. i'm cleaning our clothes and henry's soiled underwear. he's been having accidents. it's the second night in a row with little-to-no sleep.i don't feel so great and am worried i might be getting sick. getting sick isn't an option because i'll be of no use to the person who really needs to be cared for. it is hard to get any sleep on my fold out chair which is a good foot shorter than i am.
3:55 a.m.
- cannot sleep. kept awake by the small child in the room next to ours is crying in pain. i can hear it clearly through the wall. "no, no, no." amen, brother.
- henry's left arm is imobilized by a large paddle. taped up.
- henry says he needs to pee.
- i grab the urinal and try to navigate to the bottom of the 14 blanket covering henry and position it on his bed so it doesn't interfere with any of the lines going into henry.
- after a few seconds henry changes his mind and declares he needs to poop, which is really diahrrea. i always live in fear of this.
- in the dark of his room i race to unplug the 3 a/c cords connected to various pumps IV polls
- i then lift him from the bed w/o pulling on any of his lines or hurting his body that has no fat
- i notice his shirt is soaking wet from the fluid leaking out of the place where the tube goes into his abdomen
- it is painful to watch as he walks on his spindly legs to the toilet
- i lift him up again because he needs to be situated such that his butt is over one container that catches poop and his penis is atop the container that measures his pee
- thankfully a nurse replaces soaked pad on his bed.
- i then make sure i am extra careful wiping his butt that has had diahrrea and has been wiped til he is raw
- i then make sure he makes it back to the bed.
- i listen as he tries to violently rock himself back to sleep.
- the alarms sound on his IV because his rocking has caused an "occlusion" so i ring for his nurse
- he needs a drink. he takes a sip but notices there is no ice in the cup. not acceptable.
- off down the hall to get him ice.
- the nurse follows me to go get a blanket from a warmer. hospitalized henry's oft-requested guilty pleasure.
4:10 am
we settle back in.
listening to henry's rocking. i can't sleep out of anxiety. short term fear: we are going to do this all again in an hour maybe less, so why try and sleep. long term: cannot shake the thought he might die soon.
4:12 a.m.
his nurse comes back in to make an adjustment to one of henry's pumps.
