Sunday, May 19, 2013

Medical Update: Hospice and acts of kindness

Its 11:02 pm

    Once again I'm home in a empty house...the last 72 hours have taken me to my limits emotionally wise.

I haven't had a chance to write too much because I pretty much have been giving Lori round the clock care...I would sign in FB,exchange a political barb with Frank Sinatra (aka Monte Lebo,our club manager at the EDGE),post a quick update and then back to Lori.

  The miscue at the U of Michigan has really turned ugly. What Lori has had to endure is almost beyond believing.
  We were passed over to Arbor Hospice about 10 days ago. The original set-up was a aide to come 3 days a week to help change/bath Lori. A nurse was scheduled for a single visit per week. A good plan on paper,right? Nope...its been non-stop every it pain management on a Saturday,medical equipment on a Friday and trouble with her g-tube that brought out a 11:45 pm visit.
  Every day,there has been a crisis of some sort...but the fistula has been the topper. It started out with a constant urination,I had to change Lori's pads over and over. This started getting worse on started affecting her sleep and because she was losing hydration,the urine started to really smell. We increased her water intake and continued to administer her gravity I.V.
  Towards the end of Tuesday,Lori suddenly developed diarrhea. It started coming through her fistula and in came in wave after wave. Pretty soon,I was back on the line to hospice asking for help. They sent a aide who helped me change and bath her while I quickly tossed in a load of laundry.
  Wednesday came about and it started out well....very little discharge and I was thinking we were okay.
But Lori started getting very thirsty and I gave her ice water and ice chips. She started getting restless and I had to adjust her bed setting several times. Kassie,our regular aid came out and showed us how to use a Hoyer lift. We put Lori in a medical recliner for the day. The sling was a bit small so she had Arbor order a larger sling.
  Lori was doing first but suddenly all hell broke loose,she had another attack. I started cleaning her as much as I could but the recliner was narrow,it made for a real challenge. Another call and soon Kassie came back over to help me lift her back...Lori started having a incident while in the lift,when Kassie went to help her,the lift started tipping...I grabbed it to steady it and we managed to get Lori back on the bed...Kassie changed her again and left....and 5 minutes later,it happened again. From 3:30 pm to 1:30 am,I was either changing her,wiping her,laundry,redoing her bed padding,getting water with no break to speak of
I slept til 5:30 am and went back down and repeated the cycle. There is nothing special about what I did...she is my wife and there isn't anything I wouldn't do for her...Kassie came again and this time we sat her in a bigger chair so I could at least clean her when needed.
  We decided to buy a bigger recliner so she called up Gardner-White and bought a chair unseen. I was downstairs doing laundry when she called. She said we could pick it up in two days,I called Big Al and he said he would help by providing his truck.
  The attacks became more frequent and the living room,which had been put in such order,slowly became littered with empty bags,towels,cups and trash bags. I would no sooner change her,clean up and get her some cold water before she got sick again....I called the hospice nurse for some advice.
Thursday night came on and due to the fact she was thirsty and had went potty so much,I did two bags of I.V. fluids.
At 3:45 am,I couldn't keep my eyes open and I staggered up stairs after one last cleaning. I set the alarm clock for 7:15 am and was out before my head hit the pillow.
Friday,7:34 am....I awoke with a start....I heard Lori calling my name...I went downstairs and had the single worst moment in my life...Lori was askew in her bed,she had had several incidents during the night,her briefs was full and there was a mess on the floor. I have never been more fucking ashamed of myself then at that moment.
   I started to clean her up...there was just so much wrong,I called for the hospice nurse and our family friend Cheryl,who came over.
 I cleaned Lori up the best I could and called for the social worker,we needed to go to hospice today. But Lori didn't want to go...I explained what was going on and that I was being outmatched here. When Kassie came over and spent the entire 60 minutes trying to clean her,I made the call and asked for Lori to be transferred to Arbor Hospice.
  They sent over an ambulance for Lori...while I couldn't ride with her,they wouldn't let me drive because I was so tired. Cheryl drove me and I slept there almost the whole way.
   Arbor Hospice is a beautiful 26 bed center. There are 4 wings,each staffed with a nurse and a aide. Lori was having so many incidents,they couldn't really keep I gloved up and chipped in. I noticed the odd stares I got from the staff as I cleaned Lori up,help roll her over,change her bedding,etc...
 I talked to the director,Dr. Marx and his resident,Dr. Breck on what we would do to slow down Lori's diarrhea. Dr. Marx suggested a medicine that would slow her stomach creating digestive juices,it sounded promising and soon after we went home.
Had a rough night at home...was overly tired and didn't sleep worth a poo. Got up,showered,grabbed some items when the phone rang,Marlene had left me a goody bag of snacks for my trip to see Lori.
She and her friend Joanna,also came over and cleaned up the bottom floor of the house. Big Al mowed the backyard with his riding mower...I'm very lucky to have such great friends.
  Saturday was supposed to find me at the Motor City Comic Con to finally meet Casper Van Dien and Dina Meyer from "Starship Troopers" with my fellow geek squad from work,instead I was making the trek back to Ann Arbor. Before I fell asleep on Friday,I sent out a request to any of my friends who were running/walking in the Komen Race for the Cure to write a quick sign on Lori's behalf and send me a picture.
Our friend Amy Lange at Fox 2,who ran as part of Amy's Angels (Amy Neilson's support group),not only created a sign for Lori but mentioned her fight on the air.

and here is the sign again:

And my friend and sports journalist Tom Leyden also created this sign:

Lori and I were so touched by this kindness....again,thank you so much and I'll be at the Race next year with my own army to help raise funds to stop this monster once and for all.

I am going to post this so I can take a quick nap before work.

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