Friday, April 15, 2016

The new facility has not, unfortunately, been a great move. I was told they would discontinue the Ativan (which caused confusion and hallucinations in the hospital) but someone called the nurse practitioner because Mike was being "agitated," trying to get out of bed, and tugging on his PICC.  She okayed another dose.  This was in addition to getting two doses of hydrocodone, 11pm and 4am.

He was so friggin' out of it when I arrived at 8:30 yesterday.  And a few minutes later the med aide came in to give him another hydrocodone! NO, no, God no.  Thankfully I was able to stop that dose.  As it was, he didn't start coming out of it until after noon.

The nurse practitioner "explained" that most of the patients are post-surgery with knee replacements and such.  The staff just need to be reminded Mike doesn't need constant pain management.

His biggest problem is the Parkinson's, and I've been telling everyone he must have a half dose of his main med in between his full doses.  It's labeled "as needed," but I've had a hard time convincing the great 'someone' to lock it in.  

Today I came in and his nutrition was still running (through a PICC line), but I noticed an error and told the nurse.

He's drinking a lot of fluids, which we want.

We had a 'care conference' today, and Dianne attended to help with our message.  I stated I would like to get him home, maybe Monday, and get him off their hands.  In my heart, I meant 'out of their hands,' of course.  They said it might take to Tuesday or even Wednesday to make all the arrangements for him to get care at home.  Fine.

Please don't think I'm a witch.  I love this guy, and I have to advocate for him.  My professional nursing credentials?  None.

Oh, but let's end with something funny.  Mike.  During the care conference he was mostly out-of-it.  But at one point, "I have a question," as he looked at the nearest employee, "What gives you the authority to hold me here?"

Bwa-ha-ha

April 13, 2016: To "The Pearl"

First: happy birthday to my "littlest" brother, Michael!

Now, to my Mister: he moved from the hospital today to a skilled nursing facility.  Hopefully he can now rehab quickly and get home.  His blood pressure has been dropping when he tries to stand, so we need to be sure he will be stable enough when just one person is helping him.

Also, found out after the transfer that somebody at the hospital had put him on Ativan (lorazepam). Not good. Very bad with Parkinson's, can cause confusion and hallucinations, which have been happening the last four days.  Julie is pissed, but the current facility has discontinued it.  I will DEAL WITH IT later.  (hah, anybody have any doubts?)

Saturday, April 9, 2016: Mike, Mystery Man

Diagnosis: we don't know.  We know a bunch of things the mouth and throat sores are NOT.  Not an infection. Not cancer. Not a virus.  One doctor seems set that the food pipe ulcers must have come from a pill getting stuck sideways for a while.  But that wouldn't explain the mouth ulcers.  They have taken him off the antibiotics and antiviral.

Discharge: there have been three plans so far!  So I won't even mention the latest possibility until, perhaps, we're walking/rolling out the door.  But he could discharge Monday.

He is getting nutrition through a PICC (central line) to give his mouth and throat a rest, but he can have "full diet" if he's up to it.

April 4, 2016: At the hospital

Mike has been dealing with mouth sores for one month now. They are extremely painful, to the point that has not eaten any solids, very little intake of softs/liquids, and very little water.  He started getting IV fluids every other day over the last two weeks.  

Yesterday he was doing so poorly I took him to the ER for fluids again (being Sunday, and no clinics open).  He was running a temperature (101) for this first time during all this.  They started fluids, which seemed to take forever before it started.  They also drew blood, took chest X-ray (no problems) and ordered other tests.  The doctor really didn't like how bad Mike looked, so they seem determined to get to the bottom of "it," and admitted him to the hospital (Meridian Park, in Tualatin). 

Mike has started having pain with swallowing, so the plan is to do a scope tomorrow - hopefully getting a definite diagnosis of what's going on and how to treat. 

Hello to whoever might be out there.  I know it's been a very long time since I've posted.  Thank you for your kind thoughts.

Monday, November 9: First maintenance

Mike had his first maintenance therapy today -- a very long session of Rituxin, the antibody/immunotherapy.  They give him Benadryl to prevent reactions, but that kicks of restless leg syndrome, really bad. He's a bit tired, but no heavy side effects should come up.
Doing it again in two months.
We had some fun this past weekend in Florence, a one night trip to see a cousin's daughter star in "Chicago." Bright, shining star!

Pic of pic

The darkest spots are the most "metobolically active."  The shoulders and neck are from arthritis.  Next down is the heart, then the right and left kidneys, and finally the bladder.
The cancer spot is between the heart and left kidney, a grayish mass, smaller than the heart.
There is a measure of the "uptake value," to assess how much of the tracer was picked up in each area. 20 would be a number for an aggressive cancer; Mike's was about 5.

October 26, 2015: Good news from PET scan.

The doctor is very encouraged by the PET scan results; so are we!  In short, there is one mass, and it is less than half the size from eight months ago.  The mass is also less dense -- thinner texture, if you will.  I took a picture of the picture, and I will work really hard to get it loaded here.  

Mike will never get rid of all the cancer.  But he will undergo a maintenance routine of immunotherapy once every two months (for two years) to keep the disease at bay.  This type of lymphoma is known to transform to be aggressive within ten years -- Mike would be 78 then -- and the immnotherapy should extend his timeframe even longer.

The doctor is still concerned about his general weakness and low iron, so she is referring him back to the gastroenterologist for possible tests.  

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In other Mike news, he saw the dentist today and will return Thursday for a filling.  They had a very long discussion about implant (Mike is scheduled for one next week) and/or removable bridge and//or permanent bridge.  Wish me luck in getting him to a decision soon.

AND in a couple of days he sees the dermatologist to have some Halloween carving on his ear.  
To be scheduled: follow-up with general practitioner; next neurologist check-in.

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Gratitude: The PET scan results, of course!