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Monday, January 20, 2014

Almost. If you're "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our true story. I very much appreciate your thoughts and comments.
For anyone who has been along for the whole wild ride - Thank you!


Less than eighteen hours after mom was transported to the Skilled Nursing Facility I was exhausted and it was barely 10:00AM.  It had been a battle to get mom a bed, another to get her a walker and yet another just to get the bedside commode emptied.  I was seriously considering just taking mom to the hotel with me; if I had to be at the SNF all the time anyway, it would almost be easier.  Almost.

I reminded myself that mom was on IV antibiotics, but that was only part of the problem.  We still didn't know if mom could even get in the car.  I made a mental note to be sure to add car transfers to our list of “immediate” goals for therapy.  I briefly wondered if all the therapists were as cavalier as the one I had met the day before.  I also wondered if the call light we had pushed was ever going to be answered.

Deciding to avoid a replay of the day before, I helped mom to the bedside commode with the aid of the bilateral platform walker that had been begrudgingly left for mom to use and helped her back to bed; I wanted to make sure she was comfortable before I left.  I needed to get something to eat and I desperately needed to lie down; I was certain it was a serious lack of sleep that was increasing the frequency of my ocular migraines.

Just as I got mom back to bed the CNA appeared, “Can I help you”.  I kept my focus on mom as I told the aide that I had already helped mom to the restroom but I would appreciate it if she would “please” empty and clean the commode.  The aide was still in the room when I kissed mom and told her I would be back later in the evening; she assured me she would take care of mom “and the commode”.

I was barely out the front door when my phone rang; the number for
the SNF lit up on the caller ID.  My heart sank.  Had something happened to mom?  I had been out of the room for less than three minutes and mom was in bed when I left; I had put her there myself.  Maybe it wasn't bad; maybe they had a private room for mom!  “Sorry, I meant to catch you before you left”, the coordinator continued, “Will you be here around 3:00”?  Was she kidding?  It was after eleven now, I had been there since just after seven and hadn't left until nearly ten the night before; I hadn't eaten and was nearly going blind from a migraine.  “I guess I can be”, I obviously wanted to know why.

“We just like to get together with new patients, and their families, if possible, to introduce ourselves.  We want to make sure you have a chance to ask questions; voice concerns, whatever”, the coordinator was bubbly, “You know, make sure we are a good fit for your mom”.  Hhhmmm, I wonder if anybody has ever considered assuring a “good fit” BEFORE a patient was admitted.  “If you can’t be here……” the coordinator began.  I cut her off with an assurance that I would most definitely be here and that I most definitely had some concerns.

I could barely see through the tears spilling from my eyes by the time I made it to my car.  I knew from past experience that I had a very small window of time before my vision would be too compromised to risk driving; I had to get something for my migraine and I had to do it fast.  I dried my eyes and sat for just a minute before heading to the closest store I could think of; Walgreens was only a few miles away.  I drove about a half mile before I knew I didn't have time to make it to the drug store; the fluttering in my eyes was making it too dangerous to drive much further.  I didn't even have the energy to make a snarky remark to the cashier at the 7-11 about the outrageous price they charged for Ibuprofen before I stumbled out the door.

Knowing I had let the migraine go too far to be tamed by just two ibuprofen and also knowing I was going to trade incredible heartburn for my vision, I popped five tablets in my mouth and washed them down with a luke warm Pepsi.  I sat in the parking lot with my eyes closed until I could see well enough to drive.  It was after noon and I had to be back to the SNF by three; a nap was out of the question, but I had to eat.  I pulled through the first fast food place I saw.

I had just finished eating and was pulling out of the parking lot when
I heard my phone ring.  Of course the phone had gone clear to the bottom of my purse and I couldn't get my hands on it.  I decided whatever it was could wait until I drove the few miles back to the facility; then I decided it couldn't.  I only made it a block before convincing myself I HAD to know who called.  Less than a minute later I was sitting in another parking lot fishing my phone out.  I smiled as I listened to the voice mail; what a nice surprise for mom, I hoped I could keep the secret.

I returned to the SNF just after 2:00PM with just under an hour to spare.  “Hi”, I smiled at mom as I walked in her room.  The smile faded when I saw the look on my mothers’ face.  “What’s the matter”, I tossed my purse to the chair as I stepped to moms’ bedside.  “I need to go to the bathroom again”, mom seemed agitated.  “Have you pushed the call light”, I asked mom as I scooted the commode closer.  “Yes, but they had to wait until the walker was brought back and it just got here”, my mother rolled her eyes.  Huh?  Where had it been, I wanted to know.  Evidently the walker had been taken back to the therapy department as it was needed for other patients; they would be back for it again soon.  Seriously?  This was NOT going to work.

Deciding it was going to be less stressful to just help mom myself than waiting for an aid, I set my anger aside and prepared for the task at hand.  After several failed attempts by mom to get up using the walker, I realized the platforms had been adjusted up for someone else; it was too high for mom to effectively use.  I struggled for several minutes trying to readjust the walker to fit mom, when I noticed she was fidgeting.  “I don’t think I can wait”, my mother looked desperate.  I moved the walker and was able to help mom to a standing position by using myself as a rail.

Keeping my hands on mom to steady her, I caught the leg of the commode with my foot and scooted it in to place.  I lifted the lid in preparation for mom to sit and was disgusted to see there was still feces in the bucket.  “You must have gone again while I was at lunch”, I’m sure I sounded surprised.  Mother assured me that she had NOT been up since I left as the walker had been taken away within minutes of my departure.

I tried to hide my irritation as I eased mom down on the commode; it was too late to do anything else.  Once again we were almost finished when the curtain was pulled back, “Your light was on, do you need something?” a nurse asked.  I couldn't help myself, I growled at the nurse as I expressed my displeasure.  The CNA (the same one who had assured me she would take care of mom “and the commode”) had slipped in sometime during my diatribe.  I don’t know what I expected at that point, but a blank stare from the nurse and a shrug from the aide who said, “I didn't know it was there”, wasn't it.

Suddenly I was looking forward to three O`clock………………….

Sunday, January 19, 2014

The War Was Far From Over If you're "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story. I very much appreciate your thoughts and comments.
For anyone who has been along for the whole wild ride - Thank you!

The War Was Far From Over

On August 1, 2013, after the huge debacle the previous afternoon, mom was “officially” admitted to a Skilled Nursing Facility within a few miles of the hospital where her surgery had been done . 
Unfortunately, there still was not a private room available and since the room we had agreed to temporarily while waiting for a private room was no longer an option, we took the only bed available.  Not only was mom NOT in a private room, she had been given the bed farthest from the tiny shared bathroom; the equipment necessary for her to be able to even stand up barely fit through the door, let alone around the bed of her roommate.  Of course, by the time we knew there was a problem; it was too late to do anything but roll with the punches.

It’s not that we didn't know there was a problem almost immediately, but again what could we do about it?  Mother had already been discharged from the inpatient Acute Rehab Unit and we were sitting in the hallway of the SNF when we learned the bed mom was promised was not available.  Where could we go?  How could we go?  We were five hours from home and didn't have a vehicle that I was sure I could get mom in/out of.  We were stuck and I was scared.

The picture submitted with
the order from the ACU.
I didn't want to alarm mom with my own concerns about the facility, so I made the best of a bad situation.  Once I finally was able to get mom situated, I began unpacking her suitcase.  I was barely able to fit the wheelchair in a crowded corner of the room; I couldn't imagine how or where her walker would fit.  It wasn't until mom said “I need to use the bathroom” that I realized we didn't have a walker that she was able to use.  We had been told when mom was discharged from the ACU that an order had been sent to the SNF and that they would have a Bilateral Platform walker for mom.  I had also been told by the Director of Therapy at the facility there was one available for mom to use “until one could be ordered”; I knew they had one, I saw it with my own eyes.  Realizing mom probably couldn't wait to go to the bathroom until a walker was ordered, I rang for the nurse.

This type of call button is
very difficult for arthritic hands,
but that's all they had.
When no one responded after the first two times I pushed the call button, I walked down the hall to the nurses’ station where I found the one nurse who was assigned to moms’ wing.  My request for assistance getting mom to the bathroom was met with frustration.  “I’ll get someone in there as soon as I have some help”, was the response from the nurse.  Understanding that she was under a lot of pressure with so many patients, I offered to go find the therapist so we could get a walker that mom would be able to use for now.  “I’ll get someone in there as soon as I have some help”, the nurse repeated louder as if maybe I hadn't heard her the first time; I stared at her as I counted to ten.
I returned to moms’ room trying not to show my disdain.  “She’ll be here as soon as she can”, I tried to keep a light tone.  I went about trying to make the small area in the small room as cozy as possible while waiting for the nurse or somebody to come help mom to the bathroom.  I was having flashbacks of the first time mom had to be in a SNF; the indignity of having to soil one’s self due to lack of staff was unacceptable in my opinion.  “I really have to go”, moms’ voice startled me; her eyes were imploring me to do something.  Once again, I pressed the call button; I set the timer on my phone at the same time.  I waited five minutes and was about to push it again when I changed my mind.  “I’ll be right back”, I assured mom.

As I neared the nurses’ station I could hear chattering coming from what I assumed was the medicine closet, so I peeked around the corner and saw the nurse and a CNA chatting; it didn't sound like they were chatting about helping mom to the bathroom.  “Someone will be there in a few minutes”, the nurse smiled at me when she saw me standing there, but didn't move; again, I set the timer on my phone.  Three minutes later I headed down the hall towards the therapy room.

“Can I help you?” the Director of Therapy asked as I entered the room.  I explained our current
dilemma and was told he would bring the walker right away.  I returned to moms’ room a few minutes later to find her uncomfortably perched on a bed pan, where she had evidently been since I had left the nurses’ station 15 minutes or so before.  I pushed the call button and we waited several more minutes before I started back down the hall; finding no one in the area, I entered a room that had been pointed out to us as “for the patients” when we toured the facility a few days before and began looking in cupboards for wipes so I could get mom off the bedpan.  “Do you need something” a CNA appeared just as I found the wipes and pulled a package out of the cupboard.

“I found what I was looking for”, I started to ease past the CNA who was standing in the doorway.  I was nearly by her when she snatched the pack of wipes from my hand telling me she had to “sign them out” to moms’ account.  I stood in the center of the hall waiting for the aide to return, wondering how long mom could sit on that bedpan.  You would think, at this point, the aide would have returned with the wipes and taken them to help mom, right?  Yeah, me too, but that’s not what happened.

“Here you go”, the aide at least smiled as she handed me the wipes, “I’ll be in there in a few minutes”.  Deciding my mothers’ comfort was more important that ripping this girl’s hair out, I went to help mom. 
It wasn't until I was attempting to ease the bedpan out from underneath mom that I realized, not only were the mattresses light and flimsy (and not secured to the frame in any way), there were no bed rails for mom to pull herself up or over with; or to keep her from falling out.  Somehow I managed to remove the bedpan and get mom cleaned up without making a mess just as the nurse appeared; the aide right on her heals.  The nurse handed mom pills; the aide took the bedpan I was heading to dump.  As she cleared the call light and handed mom her water to swallow the pills with, the nurse said “Did you need something?  Your light was on.”  Are you kidding me?!

At some point the therapist had entered the room with the bilateral platform walker he had promised to bring “right away”.  The therapist acted inconvenienced when he said, “Well, I guess you don’t need this now”.  Are you KIDDING me?
I tried to stay calm as I reminded the therapist that we had been assured there was a walker available for mom; “She might need to use the bathroom again sometime”, I said sarcastically.  I’m not sure how the therapist expected me to react after telling me why mom had to use the bedpan until she had been formally evaluated, which he wouldn't have time to do until “sometime tomorrow”, but I’m pretty sure he was as surprised as I was at the sharpness of my tongue.  After quite a bit of back and forth between me and the therapist, he finally agreed to leave the walker for mom to use.


I may have won the battle, but the fact that there was a battle indicated there was a war; I knew the
war was far from over.

Thursday, January 16, 2014

Seemed like an Eternity....... If you're "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story. I very much appreciate your thoughts and comments.
For anyone who has been along for the whole wild ride - Thank you!

Seemed like an Eternity.......

I was almost jogging down the corridor when I noticed the Social Worker/Discharge Planner stepping out of moms’ room, I quickened my pace and was nearly running as I was cut off by a bed being wheeled into the intersection.  I wasn't close enough to yell to her without disturbing the entire Acute Rehab Unit, so I kept my eyes on her to watch which way she went.  It’s been my experience that hospital staff disappears pretty quickly sometimes, especially if you REALLY need to talk to them.

I had seen the Discharge Planner turn left at the intersection right by moms’ room, so I turned right hoping I could catch her.  I didn't see her as I turned the next right either.  Assuming she had slipped in to another patient’s room, I took another right and headed back down the hall towards moms’ room; I was almost there when I heard my name being called from behind me.  I was startled to see the very person I had been looking for running to catch me.  As the planner approached me looking very serious, I got nervous and started babbling an apology for being so late.

How had I become so indoctrinated as to even think I needed to apologize?  I wasn't even that late when you consider how much time I had wasted waiting around for them over the last two years (them being doctors; nurses; therapists; AND discharge planners among a host of other medical professionals).  At some point I realized my PTSD had kicked in; my apology had taken on a defensive tone, my stance was aggressive.  Adrenaline was pumping through my body; I could feel my blood pressure rising and my “fight or flight” instincts taking over.  Since “flight” wasn't an option (I couldn't leave mom), I was ready to fight.  I instinctively jerked my arm away as the planner reached toward me; her smile and soft voice caught me off guard, “It’s OK, you’re not late at all”.  Huh?  “I've scheduled transport to the SNF for tomorrow afternoon”, the planner smiled again.  Huh?  I couldn't believe what I was hearing and my mind started wandering.

I reminded myself I was in a different place at a different time with a different set of circumstances; for the most part these people were team players.  I tried to put myself in the discharge planners place; it was her job to make sure people didn't overstay their welcome, meaning no longer than the insurance companies decided they should stay, regardless of what was really in the best interest of each individual patient.  Gone were the days when your family doctor took care of everything, except the most major of surgeries, often right in his office; many times tackling multiple afflictions and even multiple family members in the same visit.  We no longer lived in a society where you stayed in the hospital until you were well; you only got to stay until you were “well enough” according to some guideline, in some manual, written by someone who may or may not have the qualifications to determine the necessary medical intervention for any given diagnosis.  It seems nothing is determined on a case by case basis taking individual needs in to consideration anymore.  Wait!

Had the planner said “tomorrow”?  Did I just here her say it was due to the “unique” nature of moms’ health; the need to assure her safety and as much continuity in her care as possible?  Maybe humanity in healthcare hadn't been completely eradicated from our system; maybe there was still hope - I did see a double rainbow that day.

You’d think with all that going through my head, I would have said more than, “Thank you.  What time”?  The planner assured me she would let me know what time the van would be there as soon as she knew for sure.  “Try to get some sleep tonight, tomorrow is likely to be a long day for you”, the planner smiled and gave me a hug.  As I walked in to moms’ room I was wondering how horrible I must look for everybody to keep telling me to get some sleep.  “Hi Honey”, my mother smiled sweetly, “you look tired”.  Ugh.  Now I really wondered how bad I looked!
I spent the next couple hours gathering the incredible amount of stuff we had collected since mom had been in rehab.  I figured since I didn't know what time we had to be ready to go the next day, I better get things together that night.  After taking the last load of stuff to my car, I ate dinner with mom and then helped her gather what she needed to get ready for bed.  With her teeth brushed; face washed and creamed; pajamas on; and her bedside table arranged so she would be able to reach what she might need, I kissed mom goodnight.  I decided the discharge planner was right, tomorrow was going to be a long day.

It was around 3:30PM July 31, 2013 before the van showed up to transport mom to the Skilled Nursing Facility I had chosen for her.  As I followed the van through rush hour traffic, I prayed I had made the right choice.  I really wasn't sure mom could handle much more in the way of medical errors or neglect without serious consequences.  Of course my primary concern was for mom, but I wasn't very fond of the idea of going to jail either!

I relaxed a little as we pulled in to the parking lot and mom was very gently lowered from the van and wheeled through the front door; she was greeted warmly and we were led to the wing mom had been assigned to.  I was feeling even better when the doctor who had been assigned to mom was waiting in the wing where mom was to reside for the next 3 weeks; I liked his immediate assessment of both mom and her medications.  Maybe this wouldn't be so bad.  Maybe?

“We can’t put her in there”, the nurse sounded irritated as the CNA started to wheel mom toward the room she had been assigned; the room we had agreed would be marginally acceptable until a private room became available.  Evidently they have a policy that two patients with the same name cannot be placed in a room together.  OK, it made sense; they don’t want to increase the risk of medication errors, I can understand that.

It was like we were frozen in time, nobody moved; we all just looked at each other.  OK?  What now?  Did they expect ME to have an answer to this dilemma?  Nobody seemed to know what to do and being so close to five in the afternoon, all the "powers that be" were gone for the day.  

Mom was exhausted and clearly getting uncomfortable.  "Page somebody", I nearly screamed.

And, there we sat for what seemed like an eternity…………………

Tuesday, January 14, 2014

I wasn't ready If you're "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story. I very much appreciate your thoughts and comments.
For anyone who has been along for the whole wild ride - Thank you!

I wasn't ready

I convinced myself that mom was probably right; with the medication having to be taken out of the refrigerator 30 minutes prior to infusion and the infusion taking approximately ninety minutes, administering it every eight hours, along with everything else I had to do, would afford me very little sleep.  Knowing the lack of sleep over the past year and a half had already taken quite a toll on me, I begrudgingly agreed to moms’ suggestion of a short term placement in a Skilled Nursing Facility for the next three weeks.  I wasn't sure how this was going to play out, mom was suppose to be discharged the following morning on July 30th, 2013 and I wasn't ready.

I was pleased at how well the Discharge Planner handled our change of plans; within minutes she handed me a “short list” of SNF’s in the area that I might find acceptable for mom.  I told the planner I wouldn't be able to even check them out until the following day and asked her what my deadline for the decision was.  “Well she’s scheduled for discharge tomorrow, so I will need to hear from you by noon”, was the reply I got from the planner.  Seriously?!  Noon?!
It was nearly 8:00PM when I got back to the hotel.  Before I delved in to the research that I HAD to do that night I called my husband, then sent a text to all my siblings and my aunt letting them all know what was going on.  I needed validation for the decision I was making and was hoping one of them would have some great words of wisdom, looking back I'm not sure the collective response of "I/we trust you" was so wise.

I was really struggling with the decision to have mom stay at a SNF until her six week follow up on August 23rd; she also had a follow up with the infectious disease doctor on the 11th.  I was having a hard time deciding which was the lesser of evils.

should I just insist she go home with me with the IV antibiotics and have to make two trips back for the appointments?  Even though it was summer time, the trip would take about ten hours (round trip) each time and require three days/two nights in a hotel.  We hadn't yet even tried the car transfers, so I didn't know how much of a challenge that might be.

Or, would it be easier on mom to spend the next three weeks in a SNF here in the area until after the final appointment on the 23rd of August?  I really wasn't comfortable with that decision after our last experience with a SNF, but decided I couldn't judge them all based on one bad experience.  With the “short list” of SNF’s in my hand, once again, I began researching.    Once I had narrowed the choices down to two facilities that I felt were the “better” choices based on the information I was able to garner, I called my older daughter.  “What are you doing tomorrow”, I asked, hoping she didn't have to work.

“I’ll have the kids with me”, my daughter readily agreed to go meet me to tour the SNF’s I had chosen.  I was feeling better knowing I would have a nurse with me to inspected the facility.  And, what better way to test someone’s patience than to show up, unannounced, with a two year old and an infant in tow? Pleased I wouldn't have to go alone for the surprise inspection, I settled in for the night.

Since I still wasn't able to sleep I began random searches of the facilities I was considering.  I have heard that if you get to the second page of a Google search it means you’re desperate; that night I found that the second, third, and even 4th pages had information that I felt was useful and I was certain had fallen to the back simply because people weren't searching for “disgruntled” employees or “injured” and/or “abused” past residents.  YIKES!  I was glad I took time to dig a little deeper!  I quickly eliminated one of the two that, at first glance, appeared to be a wonderful place for mom (OK, maybe not “wonderful”, but certainly acceptable).

At 10:00AM the following morning I met my daughter and grand babies at the only place I had left on my list.  It was a big, beautiful building with well kept
grounds.  There were condos for independent living; an ALF for those who needed a little more assistance; the SNF for people, like mom, who needed skilled nursing and rehab; then there was a nursing home.  Not knowing which door we were to enter, of course we picked the wrong one and entered on the ALF side.  It took us several minutes to convince the receptionist that, with the babies, it was easier for us to walk through to the other side than to load them back up and drive around.  Begrudgingly, the receptionist finally told us which turns to take to get us through to the SNF side of the building, and then she cautioned us about how easy it was to get lost.

It turned out we did get lost several times as we wandered through the facility, I didn't consider this a bad thing.  Fortunately, everybody we ran into was very
helpful and in just a few minutes we had arrived at the SNF.  We talked to residents; nurses; kitchen workers; maintenance men; therapists and the intake coordinator.  Everybody was extremely nice (except the ALF receptionist, but I figured she was just having a bad day).  The common areas were clean and we didn't detect any unpleasant odors.  Unfortunately, there were no private rooms available for us to tour; we were assured there was going to be a private room available for mom within a day or two as we were shown a double room that was marginally acceptable.

Since we were assured it would only be a day or two before a private room would be available, we decided we could make do with the double room for that long; it was close to the nurses’ station and mom would have the bed closest to the bathroom, so that was good.  As long as I was close enough that I could get to mom quick if she needed me everything should be fine, right?

Part of my research the night before had included finding an Extended Stay motel about a mile away where I was able to get a reservation the following week.  While I would have rather stayed at the hotel where I normally stay, I felt I needed to be closer once mom was in a Skilled Nursing Facility rather than the hospital.  Remembering moms’ reservation was expiring soon, I dialed the number for the Discharge Planner at the hospital.

I knew I was past my noon deadline, but just barely; I left a message for the discharge planner that we had made a decision.  Feeling like we had done all we could to ensure mom would be safe and well cared for, we left the facility and went to lunch.

Spending time with my daughter and the babies helped take my mind off of everything else I had going on.  Listening to my grandson chatter and my granddaughter coo lightened my mood considerably.    It was nearly 1:30PM when we finished eating and loaded the kids in my daughters’ car.  The sheer delight in my grandsons’ eyes as I caught the kiss he blew was still lingering in my mind as I got in my own car and eased out in to traffic.  They say “every cloud has a silver lining”, my grand babies were mine!

As I headed back to the hospital to make arrangements for mom to be transferred to the SNF, I dialed the Discharge Planner again; still no answer.  I dialed moms’ cell phone; no answer.  I had no idea how quickly they were planning on moving mom and was hoping that my earlier message hadn't prompted them to start the move without me; the Intake Coordinator at the facility had indicated they already had mom on their list, but I hadn't thought much about it at the time.

My mind was going 100MPH; my car was going eighty as I approached my exit,
which wouldn't be so bad except the speed limit is 55!  I really have to stop that!

Monday, January 13, 2014

It had to be NOW!

If you're "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story. I very much appreciate your thoughts and comments.
For anyone who has been along for the whole wild ride - Thank you! 

It had to be NOW!

Mom worked hard in her therapy sessions; the therapists all raved about her.  I knew she was determined be able to go home as planned on July 30th, 2013; less than a week away.  On the days her therapy was scheduled at a “reasonable” hour I tried to be there to see what exercises she was doing; what I might be able to recreate to help mom at home.  I took every opportunity to glean as much information about how best to help mom.  I learned a lot by being there and helping with things that allowed the therapist more time to work with mom; just offering to push her wheelchair to the gym as the therapist walked with mom gave me time to talk with and get to know them.

Several of the therapists had worked with mom in February after her MAJOR spine surgery and mom is very socially adept and had gotten to know them quite well during the month she had spent in Rehab.  Mom could tell you who was getting married; who was getting divorced; who was pregnant or had recently given birth; and any number of other things.  It really did make it easier to trust and establish relationships with people you knew a little about.  Each day when I arrived at the hospital mom would share any gossip she had been able to glean since she had last seen me.  I stored these bits of information like a squirrel storing nuts; I might need it!

As I watched mom rest I wondered how much difference her care at home would be now that she did not have a joint in her knee.  It would certainly make things a little more challenging when we got home; heck, it would make it more challenging to GET home.

I was thankful that Home Health would be involved to help with moms’ rehabilitation.  My mind was wandering when the thought hit me that I had not yet heard how we would deal with the IV antibiotics that needed to be delivered through the MID-line they had inserted in moms’ upper arm (they were unable to insert a PICC line due to scar tissue build-up from previous lines).  With only a few days before mom was scheduled to be discharged I decided I should find out what the plan was.  I kept my eyes on mom as I quietly slipped out the door; I nearly knocked the discharge planner down when I came out the door and she was standing there.

“You’re just the person I was looking for” the Discharge Planner smiled at me.  I told her I was just going to look for the doctor to find out what the plan for discharge was.  “That’s what I was coming to talk to you about, I think we have it all worked out”, the planner smiled.

The plan was to meet with a representative from the drug company who would show me how to administer the medication through the mid-line three times a day (every 8 hours).  I was surprised; I had really thought I would have to put up more of a fight to get this worked out after being told the previous two times it wasn't possible.   Of course, there were still other details that had to be worked out before I would be able to take mom home.

I was feeling pretty good about all I had accomplished.  With the IV antibiotics under control and having a scheduled time to work on car transfers I headed back to moms’ room.  “Hi” I said as I walked in to find her awake.  Mom said “hello”, but not much else; she didn't look like she was feeling well at all.  I chattered, trying to disguise my nervous energy, as I gathered moms’ dirty clothes.  After assuring mom had what she needed for the evening and her clothes set out for the next day, I kissed mom and left for the night.

When I returned to the hospital on Saturday morning, mom didn't look good.  “I don’t know if I’m going to be able to go home next week; I don’t know if I’ll feel good enough”, moms’ eyes were filled with sadness.  I asked her what was wrong and reminded her that there would be good days and bad.  “Let’s just get through the weekend and see how you feel next week”, I suggested to mom; I had no idea what we were going to do if she was unable to make the trip home.

On Monday morning July 29th, 2013, mom still wasn't feeling great, but was very anxious to get out of the hospital.  That afternoon the representative from the drug company supplying the IV antibiotics came in.  We were given two choices in how the medication was to be dispensed; mom looked dubious.  It was clear the representative wanted us to choose one over the other and I was fairly certain it had nothing to do with the level of difficulty we might encounter; I believed her motivation was due to a vested interest in one of the products.

We chose “the other”; it looked easier.  The financial burden for us was the same with both systems.  Medicare approved it, but her supplemental insurance did not.  Still we felt the $187 per week co-pay was worth it to be able to go home; to be in our own beds.  Having won the battle of the at home IV infusions, I was feeling empowered; the feeling was short lived.

Once mom and I were alone in the room, mom turned very serious.  “That’s going to be too much on you”, mom said.  Even though I assured mom I could handle it, I wasn't sure; I was nervous.  After talking for several minutes about our options, mom made a decision.  “Are you sure?” I couldn't believe what I was hearing; I hoped we didn't regret it.  “Well, if that’s what you want to do, I better get busy”, I only had a short time to get everything in order and I knew what my first task had to be and it had to be NOW!