When I got up this morning I was in a rush. The hospice regulars were coming over plus the counselor and a social worker. They had heard about the blog and wanted to come see it. Although they were supposed to come out anyway, I was a bit excited that they were interested.
As you might expect I’m in a get up, get dressed, get the house in order frenzy. I went over to check on Daddy and saw where Lewy had ripped out the catheter sometime in the night. There was blood everywhere. No pee, just blood. OMG! My mind goes into a mild panic.
Its 7:30 and the phone is ringing. Summer, our new nurse tech that replaced Yvonne was wondering if I would prefer she come on early or wait until her last call, since she lives very near us. No brainer….EARLY! I explained to her what had happened. She is actually a nurse, but is for whatever reason doing the tech work so I figured she could take care of the catheter.
No, well not really she said. She could tell me what to do, and I could do it, but she was not allowed to do such stuff. OK. I can take it. I’m tough. Sure Come on.
Summer arrived in no time. She came in and started looking at Daddy’s penis and all the blood. The decision was made to clean him up first. Her normal cleaning takes about 45 minutes. This time it was almost 2 hours. She had me get ice to put on him, then wet rags into the freezer to pull out nicely chilled to wrap him up to prevent swelling. She sopped and sopped the blood. It just kept pouring out. After about 8 ice rags it slowed down enough to wrap Lewy’s man hood up in a pee pad cut down to size and wait for the nurse. Summer called her and prepped her for the afternoon festivities.
Nurse Goodbody arrived about an hour later. With her were her implements of catheter insertion. She cleaned Lewy’s penis a bit and the blood was still flowing. Lewy was miserable. I had started the pain meds on him before Summer got there and was squirting him every hour on the hour all morning. He was still in agony. Nurse Goodbody inserted a new catheter. Blood poured through it; enough to fill the bag almost half full. It was loaded with long stringy tissue and blood clots. So much so that it quickly became blocked, and we decided to go for a second new catheter.
This one was being difficult. It just did not want to do right. She felt it was not fully inserted but was not completely sure. She brought with her several bottles of Saline Solution to flush his bladder. One by one she emptied the bottles, 400-500-cc’s into Lewy’s bladder. You could literally see his belly rise from the extra water. But nothing was coming out.
Nurse Goodbody gave me a choice. I could continue to irrigate every other hour or we could call an ambulance.
I went to get my shoes and socks. There was no way if he is blocked from peeing that I’m letting her go without dealing with it. She called the Hospice Doctor on call, then the ambulance service, and then the receiving hospital, and had it all set up in minutes. It would have taken me forever.
The ambulance arrived about an hour later and we played chase through downtown interstate traffic. Loads of fun. These dudes go 85 in 55 zones without lights…I’m more of a 57 miler myself, but anyway here we went.
We arrived at one of the large downtown not for profit hospitals and within 5 minutes I was back in the room with Daddy. They had taken him in, plugged him into all the monitors and had 3 nurses in the room when I arrived.
The head nurse came in and took over. She explained that they were going to insert a 3way catheter and irrigate him. We needed to get the blood out of his bladder. With just a few flicks of her wrist she had the one Nurse Goodbody had inserted out and this new 3 way in. As soon as she put the 3000cc bag of saline to it, the blood poured out the discharge tube.
Then came in Dr. Cutie Pie. Small framed, angular chin, with spiked blonde hair…maybe 32 years old…I’ve come to expect ER doctors to be a pain in the ass. Perhaps we have been going to the wrong ER…Dr. Cutie Pie was attentive to Daddy and was nice enough to take the time to talk to me about what had happened.
Then he asked about Daddy’s general health. He was looking at Lewy in all his glory. Eyes shut but fluttering. Straining for no reason. Lifting his arms in the air to do whatever it is he does. I figured this is another Doc without a clue about LBD.
“He is in late stage 7 Lewy Body Dementia.”
Dr. Cutie Pie asked if he had a biopsy or had a CT scan run for the diagnosis. I’m thinking I never heard of a biopsy for LBD but why challenge? What would be the point?
“No, he was diagnosed by his reaction to the meds and his symptoms. He had a CT scan but it was negative. Are you familiar with LBD?
His answer blew me away. He had studied under some of the foremost LBD researchers. I had to ask “Where was that?”
“At Harvard”.
You could have knocked me over. I told him about having set Daddy up for Brain Donation to Harvard. Of course then I had to accept he probably knew more about it than I did, so I asked about the biopsy. Sure enough, if you want to go that route (as he put it) you can have a biopsy to see if there are bodies or tangles in the brain. But we agreed quickly, there really isn’t much point in doing it. There are other ways like the meds…and yes very often mis diagnosed.
I told him how unusual it was to run into someone that knew about it. “Oh most doctors of course know”. This time I had to disagree.
“No, not really”. So far, only the diagnosing specialist, of all the doctors we’ve seen is the only one who had much of a clue beyond of course understanding what dementia meant. Cutie Pie was amazed to hear this. Hopefully that means he is talking it up to his buds and the word will spread.
I asked if he could give me a clue on expectations of a timeline.
“Tomorrow, the next day, or two months from now…If it were my Dad, I’d hope for tomorrow.”
Yep. He knows LBD alright.
It’s just a hard way to go.
2 comments:
Stella said...
Oh, our poor Mr Lewy. How awful for him and for you. How fortunate for you to find a doctor with whom you could speak. And question.
Stella said...
I don't understand why the doctors are so against considering the possibility that it could be LBD. My dependable PCP who has been treating my LO since he examined him for the bugs which had invaded the area of his genitals. No bugs were found. The dermatologist could find none and suggested a psychiatrist. That was so long ago and everything about my LO was "normal" we were amused. [How little we knew what the future would hold]. About 12 years ago he began "seeing" things. This was before he lost his sight. He had strange reactions to medicines... even Lipitor nearly pushed him over the edge, for goodness sakes! And the nighttime acting out dreams. A big one, oft repeated, was standing guard over the prisoners on Mussolini's train. It has been a long time since he wanted to go out in public because he discovered he would be talking with someone and ask about a family member,, only to be told that the person had died. He was so embarrassed and I knew he had gone to that friends wake. I knew something was extremely wrong but some days he was so much "himself", I wondered why I worried. In November of 2007, I found the forum. Need I say, "Aha"! The Neurologist said [shouting at me], "I say its strokes!". True he has had minor strokes. My wonderful psychiatrist will not commit to a diagnosis but he is treating it "as if" and my PCP smiles and says we can't know for sure until after death. I wonder why they feel this way. They know.