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Wednesday, July 10, 2013

10 - I am not amused!

Today is day July 10th (and my 10th post) in the 30 day blog challenge I joined.  For anyone "just tuning in", this post may leave you wondering what the heck I am rambling about.  I promise it won't take too long to go back and review my first 9 posts so you can catch up with my story.  For anybody thinking there is nothing here that could affect you, I hope you're wrong.  I hope you are wrong, not because I wish bad things for you, but because that would mean that you are truly alone in life.  You see, although my story revolves around senior care giving and health care, I believe there are lessons within my story that could be applied to ANYBODY that might EVER know someone (or be someone) who is need of a little help, no matter their age.

Roller coaster rides belong in amusement parks.

I'm scared of roller coasters and

I am not amused!

After several weeks of mom seeming to do well and thinking we were on the road to recovery, (At some point in the last few months, everything became "we"), our ride had another twist.

Mom was in more pain and her appetite was not what it was just a day or 2 before.  She didn't get up and pour over the many puzzles that my brother delivered to her every day.  She seemed irritable.  She didn't engage in conversation.  She just didn't seem herself.

It's just the weather, I told myself.  After all, it had been nearly a hundred degrees for way too long.  Or, maybe she had just over done it with her exercises yesterday.  And then my mind went in to panic mode.

Had I forgotten to giver her her medications?  Had I given her the wrong meds?  Maybe I had given her more than I was suppose to or not enough.  With that many pills it could happen so easy, even though I was careful.  No, I didn't think that was it.  I quickly ran through my mind to what could be different, what could be causing this.  I couldn't pick anything that stood out.  I checked her blood pressure and her temperature.  Normal there.  Her knee was swelling a little again, but it wasn't red or warm to the touch.  I finally commented to her that she "seemed a little off".

She calmly said, "the infection is back".  WHAT?!  Certainly she is wrong.  That can't be it, can it?  I called the doctor.  "We don't have any openings, but she has an appointment scheduled in a couple weeks" I was told.  "She can't wait that long", I replied rather impatiently.  Just as impatiently, she told me that she was "really" sorry and that "if I thought it was that urgent" to take her to the Emergency Room.  It became that urgent quickly.  Here we go again.

As I followed the ambulance down our familiar path of travel I cried.  I cursed. I wondered where it had gone wrong - AGAIN.  And then I prayed.  I prayed that my mother would be spared anymore pain.  I prayed that I would somehow be OK without her, should this be her time.  I prayed that it was NOT the infection, but maybe just a flu bug.  I prayed for so many things.

I prayed that the doctors and nurses tending to mom would be filled with compassion.  I prayed that God would equip them with the skill they needed  to comfort her and hopefully cure her.  I prayed for my own strength and sanity.  I prayed for direction.  I prayed for wisdom.  I prayed that this time someone would listen.
I just prayed!

More blood draws and more IV antibiotics, some relief and then "discharge instructions".  WHAT??  Shouldn't they keep her another night or maybe until they are sure it's NOT the staph
infection again?   I guess not.  Working through moms obvious pain, I got her dressed and we were back home again by late afternoon.

By morning we would have to call for the ambulance again as mom couldn't hardly move.  Her blood pressure was elevated and her pain had reached new levels.

Her pain level is what got their attention this time.  They drew more blood.  And, then they drew some more blood - a LOT more blood.  The drew enough blood for the tests and the cultures necessary to determine if the staph had returned.  The results of those cultures take several days.  They admitted her and started IV antibiotics again as they waited for the cultures.  Sure enough, her blood stream was once again infected with staph.

She responded quite quickly to the antibiotics this time.  Another few days in the hospital before I was once again approached by the Discharge Planner.

I explained to her that the plan was that I would be taking mom home with me.  She said she didn't think that was possible because of the IV meds that she would now need to be on for another 6-8 weeks.  "How about Acute Rehab here at the hospital" I was ready this time as she was handing me the familiar list of Skilled Nursing Facilities to choose from.  At least I thought I was ready.  She smiled sympathetically (or maybe it was more of a condescending smile, not that I think about it) as she told me that wasn't going to be an option this time because mom was not going to need as intensive of therapy as she had the first time.  Besides that, they were full.

Well, at least I knew now that they wouldn't discharge her until they had one of our signatures on their Medicare release form.  It was a form that we had been asked to sign each time before her discharge, one that I had paid little attention to.  I had finally taken the time to actually read that form after realizing that each time we had been asked to sign it, discharge seemed to happen a little too quick.  They couldn't or wouldn't begin the discharge process until we signed.

Well, then, I guess she's staying right here because "I am not signing that form".  Clearly frustrated with my lack of cooperation, she told me she would have the infectious disease doctor come talk to me, maybe they could change her to an oral antibiotic that I would be able to take her home with.  So, I waited and I waited and I waited some more.

Waiting for doctors had just become part of my day.  I was getting use to spending hour after hour waiting for doctors to have a "break in their schedule" to come talk to us.  I knew how to get them to come though.  After all, this wasn't my first rodeo!  All I had to do was walk out to make a phone call, grab a snack or run an errand and they would be right there!  Or, at least that's how it seemed.  Well, I decided to test the theory.  I had to get out of there for at least a few minutes.

I decided the cafeteria was the best option right then and would take the least time.  Any other option would involve leaving the hospital and I didn't want to test my theory that bad!  I spent 10 minutes trying to find someone to tell that I was leaving for a few minutes and asked if the doctor came in to please let him know I would be right back - 15 minutes tops.  Of course the cafeteria was crowded, so taking enough time to actually get food was out of the question.  When had I last eaten?  I couldn't remember.

I grabbed a soda and headed back to moms room as quickly as I could.  I probably checked the time three times as the elevator stopped at each floor to deliver other people to their destinations.  Not bad.  13 minutes........14 minutes, I got this!  Perfect, I was only gone 15 minutes.  Better yet, the doctor I needed to see was sitting at the nurses station.  He was on a phone call and had moms file up on the computer.  I made eye contact with the nurse to let her know I was there (she already knew I had been waiting for hours to talk to the doctor) and went in to let mom know the doctor was on the floor and we would surely see him soon.

"He's already been in", she told me.  WHAT?  What had he said?  She couldn't quite remember except that he would be back in tomorrow. I was just getting ready to run out to catch the doctor, but mom was still talking.  The nurse had also been in.  Oh, and that "other" lady.

Then I heard her say, "There's a copy of that form they needed signed", and my heart sank.  STAY CALM!  "Which form mom", although I already knew in my gut which form it was.  I didn't wait for her to answer, I could see what it was and I could see it was signed.  "Gonna try to catch the doctor", and I was out the door.  I was trying to decide if I should catch the doctor or look for that "other" woman about the form.  The doctor, I decided.  After all, the form was already signed and I couldn't un-sign it.

Good!  The doctor was still there.  I stood just out of ear shot and waited for him to finish his conversation with the nurse.  I don't know if it was in his plan or time schedule, maybe it was because I was in his path to leave (he was clearly done for the night and heading out), but he did stop to talk to me.

He was very cordial and listened politely & sympathetically as I asked a LOT of questions.  Most of them he didn't have an answer to.  He knew she was really sick.  He knew she had a staph infection and he knew she would have to be on IV antibiotics for 6-8 weeks.

He didn't know how soon they were planning on discharging her, "but she would need to go to a Skilled Nursing facility".  Then I remembered something that nurse a few months ago had told me.  "What about the infusion clinic?" was my next question.  That would depend on which antibiotic and how many times a day was the explanation.  "We need another day of growth on the culture before we know which antibiotic it will respond to" I was told.

In our area the infusion clinic is not open except during the day, so if it was to be given 2 or more times a day the infusion clinic wasn't an option.  "But in a SNF they can do the infusions", the doctor reasoned.

I reminded him that she had almost died there before because that infection came back so quickly and it took so long to get help.  She needed to be at home where we could make those critical decisions or she needed to be somewhere that had a doctor on staff 24/7.  She needed to be somewhere that could understand the complexity of her health.  It wasn't just the infection.  It was her whole host of other afflictions too.

We agreed that we would decide "tomorrow".  He was gone before I thought to ask if he had any idea what time tomorrow.  Looks like I'll just have to wait it out......AGAIN!

I must be tired.
Did I just willingly agree to wait some more?
WHEN tomorrow?

Oh, boy, here we go again.

What are we going to do now?

I hope you will visit another day to find out!


Anita Scott said...

When you put all of these events together, it really does seem like they were trying their hardest to just get us out of their hair. If they would have spent HALF the energy actually doing the footwork to take care of mom as they did trying to get rid of us, we may not have been so dissatisfied!

Anita @ Losing Austin said...

Oh gosh, what a ride. I have a lot of experience with waiting, and with knowing more about how to take care of my loved one than the doctors. My husband has a chronic illness that no one understands, and hospitalizations and waiting go hand in hand.

I'll be back!

Gwynne Montgomery said...

I don't know where you live or what all your options are, but I do know that Medicare DOES pay for Skilled Nursing home health care. They will do instructing on the infusions, can come multiple times a week, and are available for calls in case of emergency that doesn't quite require ambulance or emergency room care.

I work as an admin for a home health care agency. Call around and see if that is an option for your mom.

I'm sending energy your way that you can get through this!

healthcare hostages said...

I think that a lot sister!

healthcare hostages said...

It has been quite a ride for sure.

I am sorry that you are experiencing much of the same. Thank God your husband has you!

I hope that some of what we have been through might help others in some way, I'm not sure how! I think sharing experiences is one of the best ways to combat some of this stuff. We all think we are "the only ones" while it is happening.

Thanks for your comments!

Make it a great day!

Anonymous said...

Brenda - I tried to comment on here before but don't think it took. I understand exactly what you are going through since I went through this with my mom, my husband and my sister. The whole process shouldn't be so adversarial but it is. I think the hospitals have a patient liaison/advocate that may be helpful. Also, the chaplains that have been there a while know a lot too. Meanwhile, I sent you an email with my phone number if you'd like to call and rant! Love, Heather

healthcare hostages said...


That's what I thought too. I had done some research and was fully prepared (with the help of Home Health) to do the infusions at home. They said something about "this type" of antibiotic not being covered in a home setting. That is something that I want to know more about. I know other people have been able to give the infusions at home.......why couldn't I. A point I will ponder until I have more time on my hands to figure it all out! I suspect that that's the way it was at one time and no one (in our area) has taken the time to find out any different - It's worked this way for years, why change it, right?

Trust me, I did called around and then called around some more! And, then I had to focus on what I COULD do for mom at that time.

Thanks for your comments! I might have to renew this fight some day!

I am trying to absorb all the positive energy i can! Thanks!

healthcare hostages said...

Hi Heather! We also went through some of this with my in-laws (but not to this degree) and my step father. My real father passed very quickly and unexpectedly when he was quite young (as was I), so I was shielded from that one! No, it shouldn't be adversarial.

And, yes, I became quite good friends with the "patient representative" through this process. She is a wonderful woman but her hands were tied.

We had a lot of support from our own church including two nurses who had retired from there. Although we never passed an opportunity for prayers, I never thought to ask any of the chaplains to help but I did let everybody that would listen (including them) how I was feeling and what I was seeing.

I have been telling this story as if I have been the only one there, but my sisters, brother, aunt, husband and children have been incredibly supportive and could probably start their own blog from their views!

It's so touch base with you again!


joy mantell said...

I'm so glad someone is letting people know what the medical field is really like. I've had some dealings with it

healthcare hostages said...

My hope is to let anybody who has experienced similar circumstances that they are not alone, unfortunately I think a lot of people have suffered indignities (and/or worse) at the hands of the very people they have entrusted their well beings with.

I also hope that some of the people who think "that could never happen" to them or their loved understand how quickly their world can be turned upside down. I just want to raise some awareness.

I want to make a difference!

Thanks for your comment and thanks for taking the time to ride along with us!