Family, love, Christmas

People I have met in the hospital during the last four weeks have reminded me about more than I can ever thank them for.

The night I arrived at the hospital where Mama is now, I saw one person in the family waiting area, a man asleep in a chair. After two days of passing each other, we had Christmas breakfast together in the hospital's cafeteria since we were the only two people in the ICU waiting area. 

Earnest Jones, of Hazlehurst, works as a maintenance worker in Crystal Springs at the Brushy Creek Headstart. He's 48 and has been married for 20 years. He said he and his wife, Lorene, married on his birthday, October 6.

"I don't get in trouble by forgetting that day," he said.

He has spent nights at the hospital with his mother-in-law.

Jones discussed spending time in the hospital with his 80-something-years-old mother-in-law while she is hospitalized in the intensive care unit for congestive heart failure. He said when he married Lorene, it was for sickness and health.The sickness and health part extends for Jones to his extended family. He said he didn't want his wife staying at the hospital all of the time. To give her a break, he spends nights in the hospital.
I asked Ernest what family means to him. His response was the best Christmas present I could have asked for.

Recovering...again

Even with Mama a few feet away having a morphine Christmas, I see kindness, hope and many reasons for optimism about the future.

Mama's emergency surgery was successful, the surgeon said yesterday. He removed about eight inches of "dead" colon, which will require about five days in the ICU here and more time to recover either here or at another hospital.

She was awake the two times I saw her after the surgery yesterday.

The surgeon said we should think of Mama's recover in terms of weeks and months.  She's back to breathing on a ventilator since the doctors wanted to make sure she would have stable breathing during her surgery. She had been through a lot recently. Sunday marks a month since she was rushed by ambulance from Yazoo City to University Medical Center.

This morning Mama was alert and heard me say "Merry Christmas" to her. Even with a lot of tubes in her mouth, she tried to wish me one too.

Will post soon a video from this morning.

More holiday complications

I drove to Jackson on Wednesday to talk to Mama in person about why she wants to live, only to to learn about the need for emergency surgery today.
It seems to never end.
The CEO of Specialty Select Hospital called me on Wednesday to tell me about Mama saying she no longer wanted to live. He strongly recommended I  drive back to the hospital as soon as possible. After speaking to him, I called Mama's room.
"I have thought about it for some time and made up my mind," Mama announced to me. "I want to die--I'm tired of fighting all of this."
She apologized for being a burden.
"I know you'll have to take care of the funeral costs," she said. "I hope you can sell my house and reimburse yourself. I'm sorry I've been so much of a burden."
I told her she wasn't a burden and wasn't going to die anytime soon, that she would continue to regain her strength. On Monday and Tuesday, Mama began physical therapy, showing signs of improvement. However, after nearly a month of hospitalization and complications associated with her condition, she reached a point where she wanted to give up.
One of her physicians later told me steroids she takes makes people more susceptible to depression, which comforted me, knowing chemicals may have encouraged her depression made me feel better.
I drove back to Starkville on Tuesday night to meet with the owner of the house I will move into by the end of the month. Since Thanksgiving, my life has been on hold, including essential duties, such as making arrangements to move. I'm not complaining, just explaining.

"I haven't changed my mind," she said

Walking into Mama's hospital room, I saw a nurse practitioner assigned to make sure she didn't hurt herself.
"I haven't changed my mind," Mama said, looking in my direction and then turning away.
After spending a few minutes discussing with her how "we" would get better, would continue to gain strength and work on standing and moving, she seemed to soften her position.
"You're so close to standing up and walking again," I told her.
She told me that during the previous night that hospital staff "took their time" when she called them for assistance, whether to change her or when machines next to her bed made noise.
"They just keep beeping all night," Mom said.

Another complication

Minutes later, one of her physicians entered the room to tell us that her perforated bowel had worsened to the point of her needing emergency surgery, requiring her to transfer to another hospital.

University Medical Center, where she had been before, didn't have any hospital rooms available. Neither did Baptist Medical Center.

She arrived at Central Mississippi Medical Center in Jackson, the hospital's intensive care unit, around 11 p.m. on Wednesday. When I saw her, she complained about intense pain in her stomach. She spent the night in another hospital with more uncertainty.

I spent the night in another waiting room, just waiting.

Lying in feces for an hour and more...

If you want your vulnerable and weak mother or other loved one to lie in her own feces for more than a hour, I strongly recommend Specialty Select Hospital in Jackson, 5903 Ridgewood Road.

 

It's a great place for you to leave someone you love if you don't give a damn, based on my experience with Mama since she has been there. 

 

Mama has only recently been able to lift her arms above her head and can't do basic movements we take for granted, such as independent actions like take a bath and go to the bathroom. That's why we entrust so much to so-called health care professionals when we select a facility to care for people we love.

WARNING: Content in this blog posting contains graphic details about what happened to my mother as part of her hospital experience. I write about this to warn others whose family member may spend time at this facility or other long-term acute care hospitals. While issues happen everywhere, medical professionals should pay special attention when working with people we love.

In Jackson, two "long term acute care hospitals" treat patients who need additional time in the hospital but don't necessarily require intensive care. When the social worker at University Medical Center suggested I visit both places, I chose Specialty Select Hospital since it's a larger facility and has physical therapy areas.

During brief tours it's impossible to know which place will provide the best care.

Often you have to rely on good faith efforts of staff and physicians to treat your family like they would treat their own, presuming they love their family. 

I have kept a journal of things here Mama arrived. At 9:07 a.m. today, a staff membe entered Mama's room.

"Can you change me," Mama asked the woman.

"Are you soiled?" she asked, watching Mom nod her head.

The woman called someone else into the room, so I left, knowing Mama didn't want me in the room while staff change her bed sheets. I spent time in the waiting room, talking to a woman whose husband had a stroke as a result of gangrene in his gall bladder and another family whose 37-year-old daughter's future looks bleak from kidney failure.

When I entered Mama's room, before I walked by her bed, she said "they still haven't changed me."

I pressed the red button on the remote, hearing someone at the nurses' station just outside the room say "Can I help you?"

"My mom has had a bowel movement and no one has changed her sheets for more than a hour," I said.

"What?" was the response.

After repeating my statement, nurses entered the room within a few minutes to change the linens and clean my mother. Last night, she told me how she felt "humiliated" and "embarrassed" not able to take herself to the bathroom. She said she didn't want to eat food so she could limit her bowel movements. I explained to her how important it is for her to eat so she can gain strength, how "professionals" at the hospital know she and many others there aren't capable of taking care of themselves and help as part of their jobs.

Later today, she said she told the nurse she didn't want to eat lunch. After the nurse left, Mama started crying, saying how depressed she felt.

"I just don't know if I have the strength for this," she said, holding my hand. "I just keep laying in his bed and can't get out of it."

Mama's occupational therapist entered the room about this time. Mom began to lift weights and resistance bands to help strengthen her arms. The therapist said the first step for Mama will be to help her sit in a "stroke bed."

For my 57-year-old mother who has been in the hospital for more than three weeks, recovery seems lifetimes away. Everyone deserves to be treated with dignity when they're vulnerable.

This isn't the first issue related to professionalism and competency I've had with the hospital.

• A few weeks ago, a staff member called me asking for permission to place a picc line on Mama's arm. Throughout the conversation, I heard the nurse chewing gum. 
• When Specialty Select Hospital transferred Mama back to UMC after she experienced complications, the disk staff there sent with the CAT scan was blank when UMC physicians tried to view problems in my mom's stomach.
• The nurses' station next to Mama's room is so loud that we hear laughter late at night. You might think it's a block party, not a "long-term acute care hospital." 
• One staff member was so lazy that she didn't want to use the trash container at the nurses' station. Instead, she opened the door to Mama's room without saying a word, tossed trash in it and shut the door. This same woman fifteen minutes later left Mama's room before she checked her vital signs. "Can someone find me a stethoscope for this woman?" we heard her yell as she left the room. 
• Staff let the door slam as they leave the room. 

All of these things may seem small to people like  Dr. Greg Oden, medical director at the hospital, but to people experience these things first-hand it means everything. It can hurt a fragile person's recovery after an already devastating experience.

Of all the letters the hospital's marketing department displays of the great care patients received at there, how many others left with psychological scars from mistreatment no person should experience?

Happy holiday, hospital recovery

Waiting in pain without relief is hell when nights bring more pain and tears in a hospital bed she can't leave.

Piercing stomach pain brought tears to Mama before nurses decided she needed pain medication on Friday night. She spends her time waiting now at a "long term acute care" hospital on Interstate 55 in Jackson. She waits now awake and alert, a contrast to her time in the intensive care unit at a different hospital when she wasn't always aware she was alive. She waits now for nurses to check on the beeping machine hooked to her. She waits to see someone she recognizes to visit, a loved one.

She waits for something better.

Antibiotics pumping through her blood stream counteract the abscess from the perforated bowel doctors discovered a few weeks ago. She waits for the pain to go away. This time around we can see the pain in her. Some of us saw her pain through the years, when she struggled with loneliness and depression of finding herself alone in an isolated house in rural Mississippi for ten years after she couldn't work anymore. She's stubborn and keeps waiting.

Watching Mom struggle in the hospital, it's hard to keep from feeling bitter about the past that led her to this hospital room, but I'll do my best to channel these emotions into something helpful. 

Having spent a few weeks waiting in the family waiting area at University Medical Center's intensive medical center, I can understand part of the waiting she has felt through the years. When you wait and wait with little indication of change, you can start to ask why bother to keep going. I'm sure that's what she has felt like for years in that old house in Yazoo County, seven miles from the "city" and a world away from the life she'd hoped for growing up there.

After she fell down outside while leaving the Yazoo City hospital a few months ago, she finally agreed to stay at Granny's house in town. The week of Thanksgiving I didn't speak with her much, but saw she'd had setbacks when I visited on Thanksgiving. As she waits now, I hope she things about the little steps of progress, how far she has come since the pulmonary embolisms cut off her oxygen, making her unconscious.

Helping EMTs move her body to a stretcher inside Granny's house, I didn't know if she would wake up. Before making the 911 call, I rubbed my knuckles against her chest and saw no response aside from breathing.

Bottles of pills scattered on Mama's bed, Granny and I wondered if she overdosed on pain pills. When it hurts so much, it's easy to overdose, especially when she forgets how many pills she took a half-hour earlier.

Mama's rare form of muscular dystrophy, called myastenia gravis, added to her  pain and failing. Her blood clots that formed in her legs and wandered up to her lungs would have killed her if hadn't gotten help.
I was in the right place at the right time the morning I called the ambulance. If I hadn't called, Granny would have let her "sleep," since she was used to Mama staying in bed when she didn't feel well.

Entering Mama's hospital room on Friday, her warm smile revealed how much she wanted to get the hell out of that hospital bed.

"It's so good to see you," she said, her voice hoarse and weak.

Seeing my mom breathe without help from a ventilator showed progress. I told her how good it was to see her as we hugged.

Mama called me her "guardian angel" while introducing me to a nurse. Spending weeks inside the ICU family waiting room, I hardly felt like a guardian anything, more like a professional waiter. I spent days and days waiting for good news and finally saw the smile on Mama's face again. Seeing that smile convinced me that stubborn woman would improve.

But it takes time.

Sitting near her, I have seen her cough but unable to break up congestion in her lungs, watched her take small cups of different colored pills. She said she wants to take fewer pills.

"By the time I take all of those pills, I can't eat anything," she whispered. "That's a poor substitute for food."

She won't be home for Christmas. Home will be different for her when she does. She won't ever live in her house again. We hope home health, maybe hospice, and Meals-On-Wheels will allow her to live with Granny for as long as they can take care of each other.

We briefly discussed the future, but Mama focuses on the present when the pain is so close.

"I had planned to feel better today," she said. "But it didn't work out."

It will.

Breathing better than a balloon

Mama can swallow and breathes on her own now.

A doctor left a message on my voice mail last night about what was happening.

"Mr. Ward, I wanted to let you know we will extabate your mother at 6 o'clock," the doctor said.

I recorded video above on Saturday. Mom's ventilator helping a turquoise balloon breathe while she did the job herself while the machine played with the balloon. Mama found the strength inside to breathe for herself.


Hanging out at Mama with tubes down her throat while pain medicine and a dozen other medications flow through her had given me lots to think about in recent weeks. Speaking with other families staying in the hospital with loved ones, I learned even more about myself. Each breath we take is the most important of our lives.

I know a lot of people in ICU thrilled to breath. Mama is one of them. One breath at a time. Inhale. Exhale.

We make life really complicated more than we should. But remember this--Inhale, exhale. Living in the present can make the difference.

Sitting in the family waiting room, I remembered and realized more than I bargained for. I won't take breathes, actions, words, friends, family and so much more for granted anytime soon.

UPDATE 10:30 a.m. on Tuesday:
Mom will move this morning out of the ICU into a regular room. Another great sign.

Improving at the ICU

Sitting in her bed this evening at UMC's intensive care unit, Mom waved at her nurse, just like she did last night.Today she has lower blood pressure and a better outlook. That's a lot for a woman who entered the hospital via ambulance from Yazoo City the day after Thanksgiving.
Her blood pressure has dropped to the 160-170 range, much lower than the 190-220 report I heard a day ago. She may still breathe through a ventilator, but she'll come off of it as here breathing strengthens.
After driving back to Starkville to work and wash clothes, I have relied on phone calls for reports on how Mom progresses from the blood clots in her lungs, the likely culprit for her going unconscious and not waking up the morning I called 911 for help. Of course, her myastenia gravis and pneumonia during her hospital visit haven't helped.
All in all, things look brighter.

UPDATE: 9:18 a.m. December 8, 2009

I just spoke to my mom's nurse and learned that Mom's blood pressure has improved and her breathing tests showed lots of promise. We're hopeful her doctors will take her off the ventilator today. Also, the nurse said Mom may leave ICU today for another facility where she will continue to recover from her pulmonary embolisms.
This week's outlook looks so much better. 

[Photo taken about a month ago when Mom was in the Yazoo City hospital.]

One stubborn mama

Mom and I have had a number of conversations during her time at University Medical Center. I use gestures and words. She speaks through her eyes, facial expressions and limited hand motions.

[Photo taken a month ago, just before Mama was released from the Yazoo City hospital. She fell down and hit her head while trying to get into Granny's car but nurses still allowed her to leave.]

Visiting her during the four periods allowed allowed at the ICU, I have seen her humor increase almost as much as her blood pressure. Doctors say their primary concerns about her right now are blood pressure in the 210 to 190 range and her breathing. While her breathing continues to strengthen each day, her blood pressure can't seem to remain consistent at the right levels.

To take get her laughing, I've made a few observations.

• Speaking loud enough so Mom could hear me, I told one of her nurses I was used to her high blood pressure. "She's had high blood pressure around me ever since I was a kid," I said, half joking about the days when I aggravated her.
  
• I told a nurse how Mom will go through extreme measures to convince me to spend a week with her. 
  

Last night I took the long way to leave the ICU and saw the sick and hurt people in bed, some had visitors. Some didn't. But of them were hooked up to endless cords, tubes, monitors and other apparatuses. I often feel like I'm hooked up to more than I can handle, but realized how little I had to worry about after seeing their faces. They seemed to wait for something--family, physicians, friends or nurses; good or bad news--something. A few years ago, a woman at work said I seem like I'm still trying to figure out what's out there for me. I guess we're all waiting for something. If I don't find it in the Starkville City Jail, I might discover it while talking to the woman from Crystal Springs who sees hope for her Down Syndrome son who had a stroke at age 4. Life is mysterious and amazing like that.

Hanging out in the ICU reminds me about the small victories that aren't so small. When Mama needs something, she can't tell us. With weak hands, she can't write what she wants, but she can point, nod and mouth words. I've learned to hear her say "help me" without sound from her mouth. I feel helpless when I can't understand. It feels like I've solved an important puzzle when I figure out she wants pillows or needs higher doses of pain medicine.

Nurses have said Mom may breathe on her own if tests go well tomorrow. We're just taking things one breath at a time. Right now, she sounds like a potty mouth comedian when she tries to talk to me. Loud beeps from her respirator overshadow anything she tries to say.

But Mama is stubborn. She'll keep trying to talk, and one day soon the beeps won't distract our conversation.

Living one breath at a time

Chances are you don't remember your first breath and won't think much about your last one. It's what we do with those between those bookends that make the difference to the rest of the world.

Seeing my mom struggle to breathe makes me philosophical about this kind of business. Sitting in a waiting room other people's family members can make think think twice about what you're doing and not doing in life.

I've spoken with a Crystal Springs woman who has been here for weeks with her down syndrome son who had a stoke when he was four-years-old. I think about the 19-year-old whose father told me about bleeding in his son's liver stopping. He thinks his son caused the wreck after falling asleep while driving.

I think of the things I've been crazy for doing but wouldn't take back--riding my bike into a swimming pool, puncturing my eardrum the second time going into the water; running away from vacation Bible school when I was six-years-old to arrive at my birthday party and hearing Granny tell me I had to sit in a chair for more than an hour for punishment. Honestly, I don't regret punching my dad in the nose when I was in the second grade, but we'll have to discuss that some other time.

I also sit here and think about all of the things I want to do and the things I have yet to realize I want to do. I wrote a newspaper column about four years ago about planning to run the Dublin marathon (Ireland, not Mississippi) and still haven't. I still need to figure out how to change the world for the better.

Mama's body has allowed her to take control of her breathing today. She went from requiring a ventilator to breathe to taking control and only needing assistance breathing. It's a big step closer to her breathing without a machine, adding distance from her last breath. We'll have more chances to do some of the things we've talked about for a while now, like taking a trip somewhere. We'll have to think of somewhere where we can get into lots of trouble.

She will transfer soon to something called a LTAC, a long-term acute care facility, a place to help her recover from her pneumonia and blood clots in her lungs. The case worker at the hospital said the average stay there is about a month.

When I go with Mama to the LTAC tomorrow I'll keep my eyes on her breathing and think about best use of my own breath. It's a shame it takes Mama not waking up the day after Thanksgiving for me to realize this. At least I realize it.