It was real bad!

Some events are harder to put in to words.........some posts (including this one) are very difficult for me to relive as I tell our story.  Please be patient with me as I struggle to spare you some of my very raw emotions on this subject.  This particular post has been written (and re-written) several times as I attempt to capture the meat of the story and leave some of the seasoning behind!

Thanks for hanging with me!  I would very much appreciate your comments/thoughts.......it helps to know someone is out there!

It was real bad!

Although the week had been pretty stressful, I felt confident I had everything in order to take mom home by Saturday (I was hoping for Friday).  Although I was sure there would be new challenges, I was determined to get mom out of the Skilled Nursing Facility as soon as possible; I was afraid they would break her.  Besides not ever having enough staff to adequately care for the number of residents there were, the inconsistencies in care; staff attitudes; management’s greed; and the continual push to keep mom as long as Medicare would allow, gave me the creeps.  “Just a few more days”, I kept reminding myself it wasn't so bad.

By Wednesday afternoon, August 21, 2013, with the exception of the follow up with moms’ surgeon, we had completed the marathon of appointments required before we could make the five hour trip home.  Between my sister; brother; daughter; and my daughters’ friend, I had already sent four full loads of stuff home and I still wasn't sure I could fit what was left in the car.  Don’t laugh!  We had been away from home for six weeks!  Besides, we had arrived in an SUV and were returning (with more equipment) in a sedan!

By Thursday afternoon, after dropping off a few boxes at my older daughters, I was positive I could fit everything else in the car; OK, I was fairly certain of it.  I had left just enough in moms room at the SNF to get her by until we left; the rest was boxed and waiting in the car.  The plan was to pick mom (and the last of the stuff from her room) and head for home immediately after her follow up appointment with the surgeon.  Of course, “the plan” had been contingent on the MID-line, which had been used to deliver moms’ antibiotics, being removed after her last dose on Thursday afternoon; then she would start on three different oral antibiotics.

When I arrived at the SNF just before 5:00pm, the final antibiotic dose (that was supposed to be started just after noon) was just finishing.  The nurse was removing the bulb from the IV line as she apologized for being late and complained about how much she had to do and how understaffed they were.  I assured her it wasn't a problem since it was the last dose; the nurse smiled and thanked me for my understanding.  We had a pleasant conversation right up until I asked, “Are you going to take the mid-line out, or will the charge nurse do that”?  The nurse looked like a deer in the headlights; she didn't know, but would go right then and find out.  Uh-oh!

Realizing mom was going to miss dinner if I didn't get her to the dining room soon; I wheeled her down the hall and parked her at her “usual” table.  “I’ll be back soon”, I told mom before going to look for the nurse.  It had been nearly 45 minutes since she told me she was going to find out about removing the line; I was sure there was a problem and needed to find out sooner than later what it was.  I sure wish it had been sooner!

“I’m sorry, we don’t have an order from our doctor to remove the line” the nurse explained they couldn't

accept the order that had been faxed from the Infectious Disease doctor (who had ordered the antibiotics in the first place).  Of course, I wanted to know why; it was policy.  OK, this shouldn't be an issue, right?  “So, we just have to wait until the doctor signs the order in the morning, right?” I could tell from her face I wasn't going to like the answer.  My mouth went dry and it seemed like time stood still when the nurse said, “The doctor won’t be in until Tuesday or Wednesday”.  I turned so quickly to face her that I wrenched my neck; I couldn't believe the implications of what I was hearing.

 

“We are leaving tomorrow” I realized I was gritting my teeth and clenching my fists; I tried to calm down before I spoke again, “Will you please page the doctor”?  After insisting the doctor was not reachable, the nurse tried to placate me when she said, “I’m pretty sure the PA will be in sometime tomorrow afternoon”.  I have to tell you that “pretty sure” and “sometime tomorrow afternoon” did NOT placate me.

“What is wrong with you people?” I was nearly screaming, “You've known ever since mom got here that we

were planning on leaving as soon as we could after her appointment tomorrow”.  I had the nurse backed in to a corner (literally) and spent the next several minutes making sure she knew just exactly how unhappy I was; how long we had been away from home; how horribly homesick I was; how incompetent I thought they were; how sorry I was that I had brought mom here; how mad I was going to be if they delayed our return home; and on and on.  Yeah, I know it’s probably not this particular nurses’ fault, but I was pretty much in a “stone the messenger” mode; somebody had dropped the ball and I expected somebody to pick it back up.

I was just about to share some more of my feelings about the facility when I noticed the daughter of the man across the hall from mom looking very concerned; remembering her story of what she (and her father) had experienced and the horror they were facing now made my blood run cold.  I quit talking and backed away from the nurse while mumbling an apology to her.  It wasn't that I felt like I owed an apology or that I didn't still believe all the things I had said; I was scared.

PS: It's ALL in God's control!

I was too shook up to talk to mom right then, so I went out to my car and cried for the next half hour as I replayed the conversation that I had with the young lady whose father I had witnessed being, in my opinion, disrespected and borderline mistreated.  The fear and mistrust in the daughters’ eyes and the terror she was now experiencing truly frightened me.  What if I had gone too far?  What if they called the police and/or convinced a judge that I was “not fit” to care for mom?  What would happen then?  Could I be in the same position this girl was in because of false allegations?  Would the state step in and assume guardianship of mom?  Would they over medicate mom to make her more compliant?  Geez, I really needed to get a grip.

An hour and a half later, after helping mom get ready for bed, I went back to my hotel room to finish packing my stuff; I was still determined to leave as soon as we could after moms’ appointment.  My plan was to have everything in the car before picking mom up the following morning; if I could figure out how to get someone to remove the MID-line; we could still be home by evening.  Figuring my only hope of getting the line removed was to get in touch with the Infectious Disease doctor, I shot off an email before I went to bed.  I really needed to try to get some sleep; try was the operative here.

 

I couldn't get the image of that young ladies terror out of my mind; I couldn't quit thinking about the SNAFU with the MID-line; I couldn't quit visually packing the last of the stuff in the car; I just couldn't sleep.  By 4:00am, I gave up trying to sleep and spent the next few hours researching random stuff on the internet; I wondered how many others had suffered the same fate as the terrified girl I had met at the SNF; how many people were kept in facilities against their will; how likely it was that mom would beat the horrible infection raging through her body; I wondered so many things.

When my phone rang at 8:00am, I wondered who was calling from an “unknown” number; the possibilities scared me.  “Hello, this is Brenda” I answered tentatively and was startled when I heard the voice of moms’ surgeon who we were scheduled to see in just a few hours.  His voice was kind, as always, when he said, “Hi, I hope I caught you in time”.  I only had a second to wonder what he was “in time” for, when he continued, “As long as your mom is doing well, I don’t think you need to drive over the mountains today.  We can just see her in a few weeks for the biopsy.  They’re doing some work and someone cut a power line at the clinic”.

How had he not known we had stayed in town; that mom was at the SNF?  I was in tears as I explained we had stayed in town to complete the IV antibiotics and see him before we went on home by the following day.  It only took a minute or two for the surgeon to offer me another option, “I’m sorry, I didn't know you were still in town.  I can see her at the main hospital if you think she needs to be seen”.  I did.

Deciding that seeing the surgeon at the hospital would facilitate us being able to stop by the infectious disease office to see if I could convince them to pull the line out of moms’ arm, I was not unhappy about the change of locations; still, I couldn't shake the feeling that something was going to go wrong.  Since I was just driving myself crazy trying so hard to get home that day, I changed the plan.

Before leaving for the SNF to gather mom, I stopped by the front desk of the hotel and extended my stay for one more night and prayed it wouldn't be a problem to extend moms’ stay at the SNF also.  It just seemed like a good idea to maybe not push quite so hard; one more day wasn't going to hurt.  Of course, the coordinator at the Skilled Nursing Facility was happy to honor my request as she reminded me that mom still “had plenty of days left” (referring to her Medicare coverage) and they would be “happy to have her” and that I really should consider just keeping her here “until her next surgery”.  I thanked the coordinator and reminded her that mom would need some of those days AFTER her next surgery which, by the way, we still didn't know when that would be.

Since I now didn't have to load the car with the remainder of moms’ stuff right then, I had some time to sneak in and quietly observe mom in her therapy session.  I was almost to the wing leading to the therapy department when my mother appeared at the other end of the hall; she was walking as normally as one could expect while keeping one leg straight and seemed to be doing it with ease.  “Hi!” the therapist saw me before mom did.  “You’re mom is doing awesome” the therapist was obviously impressed.  A few minutes later mom impressed us both as we watched her descent in to the passenger seat of the car with relative ease.

A half hour later, with a glowing letter from the therapist in hand, I wheeled mom in to the main hospital and

up the elevator to see the surgeon.  Since we were a little early, I decided to take a chance at catching the infectious disease doctor and hopefully figuring something out about the MID-line; the doctor was not in that day.  “Well, we may have to stay until Monday” I said to mom as I headed back toward the elevators.  “Mrs. Adams?” I heard someone calling from behind us; it was a nurse from the ID doctors’ office.  Evidently, the doctor had checked her email and called in to tell her staff to help us with the MID-line; five minutes later there was only a bandage where the line had been.  Another five minutes and I was helping mom on to an X-ray table on the orthopedic floor before seeing the surgeon.

I hadn't seen my mother’s leg since the last time she had showered at the SNF, so I stepped up to the table to get a peek as they removed the brace.  OH MY GOD; I stifled a gasp.  As we waited in the exam room for the surgeon, I convinced myself I didn't need to worry; the surgeon had told us the knee would never look “right”.  Trying to focus on anything but moms’ knee, I was happy to join mom in her conversation about the first thing she planned to do when we got home.  “It’s probably a good thing we decided to wait until tomorrow to leave since it’s getting so late” mom said just as the door opened and the surgeon greeted us with his pleasant smile.  I handed the surgeon the letter from the therapist saying how well mom was doing; she had walked 175 steps that morning; they hoped to work with her again after the new knee was in; etc.

The surgeons’ smile faded almost immediately when he looked at moms’ knee; he dropped his head in to his hands when he pulled up the X-Ray.  “Excuse me just a minute” the surgeon abruptly left the room, leaving us wondering how bad things really were.  While we waited I sat and stared at the X-ray that was left up on the screen.  I was no doctor, but I could tell what I was seeing wasn't a good thing; in fact, if I was seeing what I thought I was seeing, it was bad.  It was real bad and things were quickly going from bad to worse.  “I’m so sorry” the surgeon said when he returned, “I know you were planning on going home today, but we’re going to have to take you back to the OR and I can’t get you in until next Friday”.

I told you it was REAL BAD!