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Ah, life! Concentrate on the joys!

8 Sep

This title was my submission when AARP had a contest for six words to describe your life at this stage. I’m trying to concentrate on the joys right now.      

As a twenty year breast cancer survivor, I had a shock this week. I thought I was developing swollen glands from my allergies. I felt my glands and found a lump. I saw the nurse practioner and she was concerned because the lump was so hard. She scheduled a CT for me. Today I saw the ENT doctor, and he did a needle biopsy.  I should have the results by the middle of next week.

Come on joys!!!! 

The results were just an infection! How lucky can one woman be?

Just Another Senior Lapse…

23 Jun

I was working with the phone company to replace a defective router that was new.  I received a Kindle for Mother’s Day and had to be able to download books on it.  

Where I ran into trouble was when the technian asked who my favorite actor was.  My brain turned to mush and I had no idea who I had given them or even when I had given it.  Finally, she took pity on me and said the first name with a “C”  Still nothing.  Eventually, she even went so far as to tell me the last name started with a “G.”  All I could think of was Clark Gable but I told her I knew it wasn’t him.  Later, I asked my husband what actor had the initials C.G. and he immediately replied, “Cary Grant.”  Of course!  Sometimes, between us we have a whole brain.

I’m reminded of a movie (I can’t think of the title) where an older man (70s) drives a tractor to visit his brother.  A young man asks him, “What is the worst part of getting old?”  And he replies, “Remembering being young.”

Kudos for Cush

22 Jun

Mary Lee Cushman’s mother threw away her report cards because she thought her daughter wasn’t trying. Unhappy and feeling inadequate, Cush remembers skipping school a lot. Because of her school test scores, colleges wouldn’t accept her. Attending a remedial program for adults at the University of Minnesota, she recalled taking a bus to the University. She then walked to catch another bus, so her colleagues wouldn’t know she was attending the “dumb, dumb, school.” There she learned to read, including speed-reading, and how to study. A Master’s Degree in Education Administration is a direct result of those efforts.
When asked who influenced her to try college, she replied, “No one, it was shear fear. Fear of what would happen to me if I didn’t get some help.”
Being learning disabled herself, she has a special ability to relate to others with the same problems. I observed her learning disabilities classroom at Renner Elementary, Parkville School District, Kansas City (North), Missouri. Cush had twenty students throughout the day—nineteen boys and one girl. Several students read animal reports aloud. They not only read them, they made eye contact. These same children went to younger classrooms and give these reports—what a boost to the self-esteem of gifted children with learning disabilities!
My reaction to the class was, “Future speakers of America…”
What a boost it would be for any child’s self-esteem to be able to give a report like that in front of a classroom. Most adults’ biggest fear is to speak in front of a group of people. Schools should consider giving all students a head start with this type of program. (For instance, second graders reading to first graders, etc.) As it is now, only the most self-confident high school students take debate.
Students start in her class barely able to read. By the time they finish the school year, they can read at their grade level. To begin to learn to read smoothly, the children pat their hands three times whenever they see a comma or a period.
Cush has a special rapport with her students. For example the children learn to spell the words could, should and would, by making the starting sound and adding, “Oh, yoU LD kid.”
Even while student teaching, she zeroed in on helping those children who were having trouble. She knew what it was like to struggle. Recalling her first three years of teaching, she now feels sorry for those children. “They were my guinea pigs.” She began using parents and grandparents as helpers and continues to do so. Together they discovered what worked for students.
A student’s mother, Roxie Homuth, remarked, “The students at Renner all consider the kids in Cush’s class lucky. The atmosphere at that school is different. Of course, it helps that Cush gives her students candy. But whatever it takes, it works.”
Remember, these children had few, if any, rewards in the regular classroom setting. Cush believes they need the instant gratification of popcorn or candy.
When Cush tutored my grandson, who wasn’t a big candy lover, he took great pride in sharing his goodies from the tutoring sessions with siblings, parents and grandparents.
Renner’s principal, George Curry, recalled his first impression of her, “Odd, unorthodox, a little out of the ordinary as an education.” He views her as uniquely different from other learning disability teachers he has observed. He sees children in her class participating eagerly—wanting to learn. “Sometimes parents feel that Cush is being too hard on their child. It’s also apparent that the children love her and most importantly, are learning. Cush asks a lot of her students and they respond positively.”
Cush, an outstanding educator, recalled helping a prior student with posters for his campaign for student council president. The student won. After his acceptance speech, the student body gave him a standing ovation. She relayed this information in a burst of pride. “The rest of my life may be a mess,” Cush, who has never married, said, “but I am good at teaching.”
She, now retired, tutors children from her home. Mary Lee Cushman has made and continues to make a dramatic and influential difference in the lives of all the children she reaches.
###
This article appeared in a small local paper in our area.

Out of the mouths of babes…

27 Mar

I took a neighbor, who uses a colorful cane, to the doctor.  As we

waited in the lobby,  a four or five-year old spied her cane and remarked, “Wow, what a great pogo stick.”

Senior Lapse

25 Mar

We stopped at our local cell phone company because we needed extra minutes. The tech asked for our pin number or our first pet’s name.

We could not remember our pin number and tried some pet names.  Finally, I asked my husband, “What was the name of the dog your dad shot?”

“I don’t remember–that was 70 years ago.”

Amid smirking customers, the tech took pity on us.

“I’ll give you a hint, it starts with J.”

“Jack,” was my answer.

My husband said, “That dog is still alive.”  

After all of this the tech replied, “I can’t help you with that, you have to buy those minutes on your phone.”

Citrus Shots

25 Mar

At my sisters request I emailed her a citrus shot recipe.  Her two grown daughters were impressed with them and wanted her to make them for their three year-old niece’s birthday party.  I emailed her the non-alcoholic version with the message:  “This is a hell of a lot of work and it cost about $35.” 

 “Wow, I am impressed,” she replied.  “That is a hell of a lot of work and way too much trouble for a birthday party.  The only way I’m making these is if they are full of vodka and I eat them after the party.  LOL, but I will try them later with a small group of people.  The only way the recipe could have been harder was if I had to plant the trees and wait for the lemons to grow.  Cake and ice cream sounds wonderful.”

 “These will last forever if you only have a small group of people to serve them to.  Just tell that oldest daughter of yours we’ll make them for her wedding reception.  Talk about incentive!” 

 

Trapped in ICU

25 Mar

October 6…After elective surgery for an abdominal aneurysm, my husband, Lynn, 65, entered ICU (Intensive Care Unit). The ICU nurse advised us that we had done the right thing at the right time. “Fifty percent of those who wait for symptoms don’t make it.”

Our son David noted: Everything went fine–“routine” per the surgeon—“all organs looked good.”

October 8…Lynn was transferred to the second floor. The surgeon expected him to be released on October 12th.

October 10th…Our seven-year-old granddaughter, Sara (named for me), came to stay all night.  We visited Grandpa in the hospital and she fell in love with what she called Grandpa’s moon boots.  She can’t wait until Grandpa comes home—she wants those boots for Show and Tell.

David’s notes: Dad went to the bathroom on his own. He laughed to the giggle stage about the movie “Christmas Vacation.”  I went downstairs to eat.  On my way back I picked up an arrangement of balloons.  When I reached his room, the TV was on and he was snoring comfortably.  I set the balloons on the table and left.

October 11th…Lynn managed soft foods and a shower.  While little Sara and I were at the hospital a friend, Bill, came by to see Lynn.  We spent most of the morning at the hospital and headed home to do laundry.  Later, I called the hospital and Lynn’s sister, Lila, answered the phone.  Sara and I went back to the hospital.  Lynn wasn’t feeling too well.  I thought perhaps he had had too much company.

We returned home so Sara’s mother could pick her up. About 7 pm, I called Lynn’s room. The man who answered the phone sounded terrible–I couldn’t believe it was my husband.  He told me he had vomited three times.  He mentioned that our best friends, Donna and Charles, had been to visit.  After I talked with him, I called Donna.  “Sara, he’s really sick.”

I hung up and called the nurses station.  I talked to both the day and night shift nurses.  If anything changed, they were to call me.  At 10 pm the phone rang.  The nurse advised me that they were moving Lynn to PCU (Progressive Care Unit).   When I reached the hospital, the second floor nurse apologized to me for not bring him down sooner.

October 12th…At 9:30 am, I called each of our three children, David, Darren and Dana.  Our daughter left work immediately.  Our sons arrived later.  I wasn’t exactly sure what happened from Sunday night until the children came Monday—I was in shock.  I stayed at the hospital overnight and slept in the ICU waiting room.  Dana, our youngest, quickly commandeered a reclining chair for me, “My mother needs one of those.”

I let the boys take over and left the room.  When I returned, chaos reigned.  Darren was telling the PCU nurse that she wasn’t doing her job properly.  Our sons requested a doctor.  The surgeon was suddenly there and he was upset, too.  Abruptly, we were moved down the hall to ICU again—Lynn, his possessions, myself and the recliner.  While I didn’t realize it at the time, this was now my home away from home.

David’s notes: Sheryl, (his wife) called.  She said Mom had called, very upset, and said Dad was doing poorly.  The infection must have been extremely severe because when I arrived, he looked terrible.  When the monitor registered a BP failed light, Darren and I questioned the nurse.  She said she had reset it.  Mom needed a break, so we went to eat.   When we returned, the monitor still registered the BP failed light.  Again, I questioned the nurse. Irritated, she came in and checked it again.  His blood pressure was extremely low—60/?.  The doctor came in, put in a swan catheter and had Dad moved to ICU.

Lynn was septic.  The surgeon explained they thought his bowel had bled through into his blood stream.  Later, the blood stream infection was verified via blood tests.  The fight for his life began.  Between Sunday night and Monday   Lynn had lost a total of ten liters of fluid.  Dehydrated, his body had begun to shut down.

Two specialists were added to Lynn’s case, a cardiologist (heart doctor) and a nephrologist (kidney doctor).

I decided not to wear makeup while Lynn was so sick.  I cried easily and mascara would run all over my face.  Besides, no makeup was my rendition of sackcloth and ashes.

I went home to take a quick shower, when I returned, the recliner had disappeared.  I didn’t say a word—I promptly burst into tears.

The night nurse reacted with, “I’ll get your chair back.”

Lynn was not doing well and the chair became unimportant.

October 13…We acquired another specialist—infectious disease.  They did a cat scan without barium because the nephrologist was afraid Lynn’s kidneys would shut down.  The test showed nothing.

My sister, Jacque, a nurse, said the chair was my security blanket.  With the chair gone, all I had left for them to take was Lynn.

I mentioned the chair episode to Julie, the day nurse.   She remarked,   “Sara, that is so sad.”  She immediately replaced my chair.

I called work—they needed to know I wouldn’t be back until Lynn was better.

October 14…Susie, my manager, visited ICU.  Lynn waved at her and said, “Hi.”

Late in the day, they decided to do another surgery with another surgeon.  Lynn wasn’t happy about this development. Both surgeons felt Lynn might have a blocked bowel.  I signed the papers and prayed I had done the right thing.

His original surgeon said, “I hope it isn’t an infection in his graph—those are extremely hard to clear up.”

I did not voice the graph infection possibility to anyone else.  If I didn’t say it, it wouldn’t be a factor.

On the way to surgery, Julie asked Lynn what he wanted to eat after the surgery.

“I want a chocolate milk shake.”

“You’ll have it.”

After a quick surgery, our original surgeon caught up with us in the cafeteria.  “Other than some adhesions, everything, including the graph, looked fine.”

October 15…David, our oldest son, came to have dinner with me often.  He didn’t have small children as our other two children did.  I expressed my thanks to his wife, Sheryl, for sharing him.  David was my rock during this crisis.  In addition to going to dinner with me during the week, he would stay at the hospital one night on the weekend so I could sleep at home.  Having David there, also gave me someone to talk to about the days events.

Lynn was still able to somewhat express himself.  Though he had a tube down his throat and was unable to talk, he pounded on the pillow.  I heard the noise and would get up to see what he wanted.  You’d be amazed at how much noise those plastic covered pillows can make when someone pounds on them.  Usually, he wanted his mouth swabbed because he was so dry.  He acquired a group of pulmonary doctors to manage his ventilator, etc.

Darren, our youngest son, brought Cody, our four-year-old grandson, to see Grandpa.  My opinion wasn’t requested. After that incident, I advised Dana not to bring her three children in to see him.  I didn’t want the grandchildren to remember him like that.

Tonight a coworker, all our children plus spouses, grandchildren and our best friends, Donna and Charles, were at the hospital.  (We had gone on a Caribbean cruise with them to celebrate our 25th wedding anniversaries.  We had intended to do another cruise but for monetary reasons had put if off.)  The ICU waiting room was full so we moved to the main reception area.  We were laughing and joking, when a by-sitter said, “You all are having too good a time.”

Little did he know–we were all laughing to keep from crying.

Donna called me later with a catch in her voice.   “When Lynn gets well, we need to borrow the money and go on that cruise.”

October 16, 1998…Lynn was on two extremely potent drugs, Leveophed and Neosyn.  He was definitely out of it.

David’s notes…When Sheryl and I arrived, Dad’s fever was skyrocketing.  He was jerking and shaking on the bed.  He kept trying to say something repeatedly.  It was a terrible experience.   This was the beginning of the next seven to ten days of trouble.  His heart rate went up into the 160’s for a long period.  The heart doctor tried medication but had to shock Dad’s heart to get it back in rhythm.  It worked and his heart rate went down to 130.

October 18…Lynn received another two units of blood.   (He received a total of six units while hospitalized.)

David’s notes: Dad’s blood pressure was up—they started giving him morphine and he slowly slipped away from us.  The fevers continued and when they spiked, his blood pressure dropped.  It was a constant up and down.  Test after test showed nothing.

One of the nurses gave me some reading material about taking care of myself.   She indicated I needed to get more rest.  I asked, “Where would you be if this were your husband?”

“Right where you are.”

I felt vindicated.  However, our family doctor jumped on the band wagon too.  He wanted me to take sleeping pills.   I declined and he called me stubborn.  Then he suggested that I have a wine cooler before bed—he thought it would relax me.  I tried the wine cooler and had a terrible night.  The next night I tried the sleeping pill—another bad night.  I decided that when I slept; I slept better without any so called sleeping aids.

Most nights I slept in Lynn’s room.  Occasionally, if I felt the need for more rest, I would go to the ICU waiting room and sleep on the couch.  When they took X-rays at 5:30 am, I would leave the room to use the bathroom, comb my hair, brush my teeth and make a pot of coffee in the ICU waiting room.

October 20…Our daughter-in-law, Charmie, Darren’s wife, took a day of vacation to spell me at the hospital.  Before I left, the nurse became nervous because she thought Charmie was staring at her.  I left them to work it out and went home to do laundry, pay bills and sleep in my own bed for a few hours.

Incidentally, since I wasn’t working, funds were tight.  I called the car loan company and explained the situation.  They let us miss a payment.

When I returned, Charmie said they took the recliner.  She informed them they’d better bring it back or I would be mad.   On a chart I kept, she kept track of the doctors that had been in.

October 21…Lynn acquired varying amounts of the drug dopamine to maintain his blood pressure.

October 22…Susie, my manager, came to visit again.  (Later, she recalled Lynn as being completely out of it—jerking and twitching.)

October 23…Lynn is on a new antibiotic referred to as “a big gun” by Julie.

The pulmonary doctor motioned me into the hall.  With his nurse standing beside him, he said, “He has less than a 50/50 chance of making it.”

Thinking back on this experience, I’m convinced this doctor, whom I barely knew, should never have told me this.  If I had to hear it, it needed to come from my family doctor.  Actually, I did hear it from him. However, he worded it a little softer to my ears—“Lynn can’t handle any more problems right now.”

My gut feeling was the pulmonary doctor and his nurse wanted to see my reaction.  If so, they got it—I cried.  I made eye contact with one of the nurses as I left ICU.  Tears were streaming down my face. I went to the bathroom to wash my face.  When I returned to Lynn’s room, I took his hand and said, “I’m a fighter and you’re a fighter—we’re going to show them.”

October 24…I told our family doctor that the pulmonary doctor had the bedside manner of a snake.

Julie and I were both in Lynn’s room when another nurse told Julie she had a call about Lynn from a urologist.  Julie gave me a puzzled look.  “Do we have a urologist on the case too?”

“I used to work for that doctor.”

“Oh, it’s probably a courtesy call.”

It was a courtesy call.  However when you have additional doctors, they also have partners and/or doctors who make calls for them.  In Lynn’s situation, we had eight doctors—that meant we saw about twenty doctors.

October 26…I prayed my frequent prayer, “May the great white light of Christ surround and protect Lynn.”

A pipida scan showed nothing.

October 27 Mike, a CNA, gave Lynn a back rub.  After that Lynn wanted to sit up on the side of the bed.  Suddenly, Lynn was having difficulty breathing and the pulmonary doctor was called to help him.

 David’s notes:  Dad was really alert this evening–pointing and winking at people.

They decided to remove the tube from Lynn’s throat as they felt it might be the source of infection.  In addition, they removed all of his surgery staples.  The surgeon told me everything went well and Lynn was headed back to ICU.

I headed for Lynn’s room.  Two recovery room nurses confronted me, “Who are you?”

“I’m his wife.”

“You’ll have to wait in the waiting room.  We’ll come and get you when we’re finished with our assessment.”

I trudged out to the waiting room as they wheeled Lynn in.  I’m not sure how long I was out there but long enough to do a slow burn.  My purse was in Lynn’s room and I had no money to buy food or even a soft drink.

I decided I would go inside the door of ICU and ask someone to get my purse for me.  I could see in Lynn’s room—only his regular nurse was in there.  I was furious at those recovery room nurses for lying to me.  I took it out on the nurse that was there, “Why didn’t you come and get me when the other nurses left?”

“I was going to come and get you when I finished my assessment.”

I had lived in this room day and night for most of three weeks and said, “I think I’ve seen a few assessments since I’ve been here.”  Later, I apologized to this nurse.   (Julie later told me they wouldn’t have physically removed me if I had stayed in the room.)

Jacque, my sister, a nurse, said, “Whenever a family member is present, you have two patients—the one who can talk is the most trouble.”

Late that afternoon, Lynn’s every breath sounded like a snore.  It was terrible—you could hear him everywhere in ICU.  This noise is called crowing. In the privacy of his room, both the nurse and the respiratory therapist said the trach should have been a size 8 instead of a size 7.  The surgeon came in about 30 minutes later to make his assessment.  Guess what?  He decided the trach was defective and replaced in the room with a size 8.

After they replaced the trach, the nurse asked me to sign the release.  I refused and the nurse asked why. “I want them to shake in their boots.”  I was angry they had to change the size of the trach and besides it was the only thing I had control of at that time.

The hospital psychologist told me an ICU nurse and representatives from Rehabilitation and Social Services were having weekly meetings about Lynn.  They were discussing what they could do to help him.  The psychologist suggested that I massage his hands with lotion and talk to him.  Physical therapy came and did a range of motion exercises on Lynn.  He seesawed between waking and sleeping during these sessions.  Even when awake, sometimes he was helpful, sometimes not.

October 30…Today they tagged Lynn’s white blood cells in an effort to pinpoint his infection.  Again it showed nothing and was frustrating.

October 31…It was Halloween and Mike, the CNA, was in costume.  About 6’4”, he had two hospital gowns on—one in each direction.  He wore scrubs on the bottom and a sign on his back that stated: If lost return to ICU.  A catheter was attached to his gown that contained apple juice and he drank from the tubing.  If only I had had my camera.  A doctor came in sporting a skeleton tie.  Those were great distractions and heaven knew I needed them.

Our friend, Bill, came to visit again.  He had heard Lynn was worse but he wasn’t prepared for my appearance.  (Later, someone told me I looked like I had been pulled through a knot hole.)  We went to the ICU waiting room to talk.  He had lost his first wife to cancer and had suffered problems with exhaustion during her illness.  He was concerned about both of us.

Jacque visited and Lynn was out of it. She later recalled he was as orange as a pumpkin. That was hard for me to see because I was with him all the time.

November 1…David’s notes: Dad mouths, “I love you,” to Mom.  Julie calls my parents “lovebirds.”

It rained 3½ inches today.  The weather outside matched my mood exactly—damp and gloomy.

Julie clamped Lynn’s nutrition tube periodically.  There was also a tube to drain off his stomach acids.

Tonight Dana told her dad she loved him.  He mouthed around the ventilator tubing, “I love you, too.”

Lynn’s hand was swelling.  One of the nurses tried to remove his wedding ring so it wouldn’t obstruct the circulation to his finger.

He mouthed, “Cut it off.”

“I’ve never had a ring I couldn’t get off.”  After quite a struggle and liberal application of soap, the ring came off.  She handed it to me and I wore it on my left index finger.

November 3…The clouds scudded by as though chased by an unseen force.  The sun vainly attempted to filter though.  Forty-one years of life with this man had moved so swiftly.  He lay in a hospital bed with tubes everywhere.  Ever mindful of those tubes, I grasped his fingers.

Julie remarked to a CNA, “There is no point in turning Lynn on his left side because he keeps turning toward Sara.”

My recliner was close to the window.  At some point during the night, I left the room.  When I returned and started to recline the chair, I knocked over the IV stand.  It hit the side of Lynn’s bed.  Thankfully, the bed side rails kept the stand from hitting Lynn.  I tried to right the stand by myself but I couldn’t budge it.  Frantically, I called the night nurses’ name.

She heard me but wasn’t sure what room my voice was coming from.  Lynn’s harried eyes met mine—he was reaching—trying vainly to find the call button.  The nurse appeared and righted the stand.  I moved the chair to the end of his bed.

Lynn vomited his tube feeding at midnight—this was extremely discouraging for me.  Each time this happens, they stopped his feeding tube.  I thought they were gagging him while cleaning the secretions from his mouth.  Because of his strong gag reflex, he always had trouble swallowing pills.  While I knew they had to clean the secretions, I wished they didn’t have to go so far back in his throat.

November 3…They resumed Lynn’s tube feeding. The female partner of the pulmonary doctor’s group mentioned she wanted to sedate him more.  Upset, I motioned her out into the hall.  “He barely knows us now and you want to sedate him more.”

Her order stood.  When she left, the nurse showed me on the respirator what they hoped to accomplish by sedating him.  After her explanation, it made sense to me—they wanted his lungs to rest in order to heal.

November 4…Lynn’s CAT scan showed only pneumonia.  I was extremely teary and Mike wished he could do something to help.  He quoted a poem he had written:

Life

Is life worth living from day to day

With glorious merriment, so happy and gay?

Or if life full of woes with tears we shed,

With fear and dread packed within our heads?

Is life worth living from day to day?

Is life worth living each precious day?

I apologized to the pulmonologist and she replied, “I have broad shoulders if you need someone to vent on.  I understand you are afraid he will stay this way.”

Frankly, I had been too optimistic to have thought of that.

The surgeon re-inflated Lynn’s trach balloon.  The nurses were afraid to inflate it as much as the surgeon did.

This was a red letter day in that they tried the long awaited CAT scan with dye.  The worry had been that Lynn’s kidneys might shut down from the dye.  Julie pushed for this test with the nephrologist.  “It won’t do him any good to die with good kidneys.”  He agreed with her.  Lynn’s kidneys did fine and the CAT scan showed only pneumonia.

November 5…I tried to get Lynn to write something.  He scribbled a line and looked at it perplexed.  It perplexed me as well.

Later I returned to the room and said, “Hi, honey.”  Lynn frowned and kicked at me.   He was on so much morphine.  I wondered what he saw.  I warned the nurses to be careful.  However, this was the only instance of his being hostile.

November 6…Lynn had traces of a staph infection.

I talked with a friend employed at the hospital.  We decided I needed some answers from someone.  Our family doctor told me his hands were tied—Lynn was being doctored by committee.  The nurses told me I should contact his original surgeon.    I requested a meeting.  Our sons compiled a list of questions and our daughter arranged to be with me.  We set the meeting for November 10th.

November 7…Lynn had a visit from a cardiologist whom we hadn’t seen before.  He arrived in a leather jacket and jeans with a stethoscope draped around his neck.

Lynn was crowing again and the new doctor worked with inflating the trach balloon.  Robin, a petite nurse, came in and reacted like a mother hen defending her brood.  She later confided later confided she had only seen this doctor once before.  The doctor ordered a size 9 trach for Lynn. No other doctor ever acknowledged this order and the trach simply stayed in Lynn’s room unused.

Lynn vomited again that afternoon.  I began to wonder if he would ever be able to eat food again.

November 8… Mike, the CNA, suggested a Triadyne bed.  (This bed moved from side to side—like an electric cradle.)  I asked the female pulmonary doctor if Lynn could have one.  She ordered it.  At first, a fifteen degree slant was all he could tolerate.  I began to see a difference in Lynn with this bed.  I thought it was helping restore his equilibrium and could be a significant step in his recovery.  (I later learned the doctor, with the bedside personality of a snake, would not have ordered that bed.)  I remember our family doctor wished he had thought of it. “It will help him regain his sense of gravity,” was the way he put it.

The respiratory nurse told me that the male pulmonary doctor was very aggressive about getting patients off the ventilator.  Next week was the snake doctor’s week and I was actually glad—maybe he would get Lynn off the ventilator.

Again his feeding tube was stopped and later resumed.

I finally learned the secret from Robin to enable me to keep a pillow for myself.  I brought a gingham pillow case from home and my pillow quit disappearing.

Robin understood I was there as an advocate for Lynn.  She was appreciative of my efforts.  It was good to know someone understood why I was there.

November 9…All the doctors arrived at once.  The female, CNA, made a whimsical observation, “Where’s the clown car?”

November 10…Lynn vomited and his tube feeding was disconnected again.

The meeting with the surgeon went well.  Though Dana was there for moral support, I handled it myself.  The surgeon confirmed that the second surgery was unnecessary but they didn’t know that until they did the surgery.  He also confirmed the wrong size trach was put in.  While I was aware of both of those incidents, it was reassuring to have my thoughts confirmed by someone in authority and I felt better after talking with him.

November 11…The nurse was apologetic because Lynn had pulled out his feeding tube while I was out.  I had warned the nurses his hand restraints needed to be tighter.  I watched him bend his head and lift his hands—it was strictly a reflex action.

November 12…Lynn was off the ventilator for eight hours—he wore a trach shield.  He received a new feeding tube that went farther down in his stomach.

November 13…Lynn was mouthing something and I couldn’t make it out.  It was frustrating for both of us.  Julie was great at lip reading—she told Lynn to take it slow.  He wanted chocolate.  Delighted, Julie received an okay from our doctor.  Lynn had a small cup of chocolate ice cream.  Then he asked for a chicken sandwich.  Unbelievable!  Julie called the doctor again and he said Lynn could have anything he wanted.   She ordered him a chicken sandwich on wheat bread.  He ate a fourth of it and mouthed, “I better stop.”

November 14…The speech pathologist visited.   Julie deflated Lynn’s trach balloon and capped his trach.  At her direction, Lynn said, “Hi.”

“You don’t need me.”

Julie re-inflated the trach balloon and Lynn could no longer speak.

November 15…Lynn broke through and could communicate by writing.  He wanted to know if I had picked up his check from his part-time job.  I had.

His next written word was fluffing.  I knew exactly what he meant.  I searched for Julie.  “Lynn needs fluffing. If he continues to need fluffing after he comes home, I’m sending him back.”

Another nurse laughed and said, “You’ll be so happy to have him home, you won’t mind fluffing him.”

When patients are unable to move on their own in ICU, they are repositioned every two hours in a series of three moves.  First, they are on their back and then moved from side to side.  On one side, two fluffed pillows are placed underneath to take the pressure off.  A fluffed pillow is also placed between the legs and another under each arm to keep the arms from rubbing the side rails.  I became a believer—Lynn never experienced a bedsore.

Lynn’s third written communication was to our son David.  He wanted to know who would be quarterback for the Kansas City Chiefs game—I knew he was getting better then.

November 15…The night nurse told Lynn he was her only patient that night.  She gave him a backrub and he was sound asleep.  I left—tomorrow would be my first day back at work.  I was all the way to the front lobby when I realized I had left my book.  When I reached the room, the nurse was standing beside his bed laughing and talking with him.  I felt a twinge of envy—I didn’t want to leave him.

November 16 …They capped Lynn’s fenestrated trach.  When a doctor came in, he said, “Hello, Dr. ____,” per Julie’s instructions.

Lynn’s looks surprised many of the doctors today.  He had his teeth in, glasses on and he could talk.  The Triadyne bed was made into a chair.   One doctor remarked, “All he needs is a newspaper.”

November 17…The dietitian and I discussed Lynn’s appetite.  She asked what he particularly liked. I suggested chocolates milkshakes.  We ordered him one for lunch, dinner and for his evening snack.  I knew if he ate nothing else, he would drink those milkshakes.  He was also transferred down a few doors to PCU.

November 19…Lynn’s PCU nurse was on the phone and I told the unit secretary I would be in the cafeteria.  When I returned the nurse said, “The surgeon wanted to talk to you but I told him I didn’t know where you were.”

The unit secretary said she tried to tell them, but no one would listen.  I was furious with the PCU nurse and expressed my displeasure to the charge nurse.  I also added, “I’ve been here too long.”

The surgeon wanted to talk to me because they were transferring Lynn out of PCU. To say I was scared was an understatement—I was terrified. This man couldn’t sit up or stand up by himself.

On the third floor, Lynn was close to the nurse’s station and wore a monitor in the pocket of his gown.  The nurse said she understood I would be staying all night.   That ticked me off because I hadn’t been staying all night for about a week.  A lot of things were ticking me off—I wanted us out of  there and yet I was afraid Lynn wasn’t ready to come home.

The surgeon called Lynn’s room before I went home.  He wanted to reassure me—he knew I had major doubts about this move.

At Lynn’s request, I fluffed his pillows before I left.

Lynn later confided that being on the third floor was the most depressing part of everything for him.  He hadn’t walked yet and wasn’t sure he could.  The physical therapist told Lynn that he lost 3 percent of his muscles each day he lay in the hospital.  He had been on his back for over forty days.

November 20…The physical therapist walked Lynn with the aid of a walker.  He described his feet as feeling as if they had cement blocks attached to them.

The surgeon came in late that night and removed his trach.

November 21…The nurse told me Lynn pulled out his feeding tube.  I admonished him, “Now you eat or die.”

We wrote down the amounts of everything he ate and drank.  He still wasn’t eating well.

November 22…Lynn pulled his IV out during the night.

November 23…Lila and our niece, Paula, were with Lynn during his lunch.  When I read how much he ate, I was surprised.  I called Lila, “I’m mad because he ate more for you than he did for me.”

She laughed and said, “I spooned in the food while Paula talked.”

Tonight Lynn was transferred to fourth floor Rehab.  I took the boots home for Sara’s Show and Tell.  Their technical name was vascular boots.  (We later learned those boots cost $528.00.)

November 26…Lynn had a day pass for Thanksgiving.  He had some trouble getting up the two steps into our ranch.  Our sons helped him in.  He ate well—I could tell his appetite was improving.  However, he was more than ready to return to the hospital–he knew he wasn’t ready to come home to stay.  To work out any problems we might have, he was scheduled for an overnight stay at home on November 30th.

November 27…The cashier in the hospital cafeteria told me, “You sure have been here a long time.”

November 28…I stopped in the hospital gift shop to buy Christmas gifts.  The gift shop volunteer said, “I bet those people in ICU seem like family to your husband.”

“My husband doesn’t remember a lot about ICU, but many of those people are like family to me.”  As an afterthought, I headed to ICU.

An ICU nurse asked, “Is he walking, is he talking?”

I made a beeline upstairs and brought Lynn down in a wheelchair.  A young woman from the lab got on the elevator with us.  She had a tray of vials in her and handed the tray to me so she could hug Lynn.

On our way back from ICU, Lynn remarked, “I don’t know most of those people.”

“You may not know them but they know you intimately.”   Though not all the ICU nurses were directly involved with Lynn, they may have helped by moving him up in bed and/or changing his bed.

November 29…The Social Services person mentioned Lynn’s soft diet.

“He hasn’t been on a soft diet.  He’s ordered everything off the regular menu since he began eating.”  Later, it occurred to me that perhaps his chart wasn’t changed from when he had eaten soft foods after his original surgery.

November 30…David followed us home to see if we needed help.  Lynn aced those two steps.  We had a commode that was supposed to fit over the toilet stool.  It didn’t work in our bathroom because there wasn’t enough room.  Lynn was unable to pull himself up off the stool and I couldn’t lift him.  Luckily, we tried it while David was there—he helped his dad up.  Lynn used the freestanding commode overnight.

December 1…I took measurements on the height of our stool and bathtub to give to the physical and occupational therapist.   Lynn was to come home on Saturday, December 5th.  I’d be home with him on Sunday, go back to work on Monday and be off Tuesday.  I talked to our family doctor about Lynn being alone while I worked.

“Actually Sara, I think he might do better by himself.  He will push himself to do more things.”

I asked Julie if she would be working Saturday—I wanted her to walk out with us.   She wasn’t scheduled.

December 2…I saw the infectious disease doctor as I was leaving the hospital in the morning.  I told her Lynn was going home on Saturday.   We talked about the possible cost of his hospital stay and she mentioned that she thought Julie, the nurse, had saved Lynn’s life.

That same night I rode the elevator with a visitor from the fourth floor.  As we talked, we discovered that both of our husbands had the same surgery.  There was a difference though—her husband went to a nursing home permanently and my husband was coming home.  How blessed I was.

December 3…Lynn told the therapist that he did a lot of the cooking at home.  When I arrived, Lynn told me he’d baked a cake.  He did—one of those package mixes that had its own pan.  He was extremely proud.

I stopped on the way home to purchase a bath mat for our tub.  I stacked two milk crates in the tub for Lynn to sit on.  With a heavy towel on top, this would work fine.

Julie called to see what time I would be at the hospital tomorrow.

December 4…Julie made a special trip to see us on her day off.  It was at least a 30 minute drive for her and we appreciated it.

“My parents are your age,” Jeanne shared.  Later she added, “Sara, I just wish you could have trusted us more.”

“Oh Julie, it was never a question of trust, I was there for Lynn.”

Julie’s remark bothered me and I decided to send a poem to ICU along with a thank you note.

TRAPPED IN ICU

I’m the patient’s spouse,

Perhaps the thorn in your side.

I’m here as an advocate for my spouse,

not because I distrust anyone.

I’m here so if or when my spouse awakes,

there will be a familiar face to see and voice to hear.

Sometimes I may take my frustrations out on you—

Please forgive me.

I’m here, trapped in ICU.

December 5…Discharge day!  Weekends at the hospital were always quieter—less staff, office help, etc.  After Lynn’s 60 day hospital stay, I felt we should have a brass band, flashing lights and applause–none of those appeared.

Lynn used the freestanding commode that night.

December 6…David came by the house to see if his dad needed help.  When Lynn tried getting up from the stool, he was able to get up by himself.  He was scheduled for physical therapy three times per week–the hospital van would take him back and forth.

December 14…Lynn had a dizzy spell and fell off the side of the bed.  We discovered he had taken too much cough medicine during the night.  As a result of a blood test, we also discovered he was anemic.  I picked up iron pills for him.

December 19…Our Sunday school class came to sing Christmas carols for Lynn.  Overcome by emotion, I had to leave the door to get tissues.  When they finished singing, three different people came up to hug Lynn.  Only one of those people hugged me and I needed that hug.  I decided when the opportunity arose; I would make a special point of acknowledging the caregivers in addition to those who have been ill.

December 21…I called our family doctor, “Lynn is making noises about driving.”

“I think he will do fine.”  He suggested I take him to a deserted parking lot and let him try driving.

December 24…Our family celebrated Christmas.  Before we opened gifts, I held a red bow up to Lynn’s neck.  “This is our real Christmas.”  Everyone applauded.

As Christmas gifts for each of our children,  I had purchased 5X7 note cards with an image from our town.  I framed these in 8X10 matted frames and attached a card that read: “We hope you have fond memories of the town where you grew up.  This print was purchased by your mother, in the hospital gift shop, where your father fought the fight of his life in October and November.

December 26…We made a trip to the jewelers to have his wedding band made larger.  Then I drove Lynn to our church parking lot. He parked for me and did well enough to drive home.

January 9…Lynn no longer needed the milk crates in the shower.

January 25…We began walking four mornings a week at a local mall.

February 14…While moving flower pots, Lynn discovered he could get up from a kneeling position by himself.

And the man goes on…