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Showing posts with label All Saints Healthcare. Show all posts
Showing posts with label All Saints Healthcare. Show all posts

Friday, March 31, 2017

The Five Stages of Republican Trumpcare Fail Grief


Miracle Girl: The Five Stages of Republican Trumpcare Fail Grief

The GOP seems to going into the five stages of grief over their epic Trumpcare fail...all at the same time.
Republicans can remain in Trumpcare fail Denial as long as they want. Acceptance will eventually come. Then, the rest of us will be able to move on to Hope.

Friday, September 9, 2016

5 Reasons Why I Needed a No Soliciting Sign for Hospital Clergy


Miracle Girl: 5 Reasons Why I Needed a No Soliciting Sign for Hospital Clergy

Hospital and nursing home clergy are supposed to lend comfort to patients and their loved ones of every religious persuasion in their time of deepest need. But they don't have an equal respect for those who have no religion at all.

I should know.

Wednesday, February 10, 2016

SfMCR: Silenced again

This photo was taken weeks later, when I was being trained to sit up in a wheelchair for extended periods. The ball was for physical therapy.
I had been ecstatic when I found I could talk a little after I had returned to the hospital to have my hemorrhaging gastric tube incision repaired. The transfer to the hospital probably wasn't coincidental to the newfound speaking ability. In the process, the deflation of my trach cuff that allowed the speech hadn't been noticed.

As hard as it was to produce comprehensible sound, at least I could speak again. My tracheostomy had accomplished what no person had ever managed to do before...it shut me up.

When a respiratory therapist checking my trach silenced this hard-won skill, I was devastated, as I detailed in my previous edition of Scenes from My Coma Recovery.

Four days after the surgery was completed, I left the hospital. In the meantime, we were able to secure a bed in the nursing home my mom had preferred to send me to in the first place, Country Villa Sheraton.

I was adamant that I didn't want to return to All Saints Healthcare because I felt they weren't gentle enough in their care of me. I had severely abraded skin around my private parts, a yeast infection, and a UTI. In my coma-dream, I eventually refused to be cleaned by my caregivers. But since that act of rebellion was all in my head, nothing changed.*

Country Villa had a brighter, cleaner look to it. I was excited about the better nursing home, which hadn't had any open beds when it came time for me to be transferred out of the hospital during my coma.

But mostly, I was anxious that Keith mention to someone that a respiratory therapist had prevented me from speaking. I had no idea what he had done, but I was desperate to regain my voice.

As I wrote about in the last SfMCR, Ricardo restored my voice by deflating the cuff that seals the area around the trach, keeping air from leaking around it like a dam. Trachs are often deliberately deflated to allow what is called leak talking. It's usually perfectly safe, as I had demonstrated the few days I had been doing it.

Though at that moment, Ricardo was my hero, later in the day, he turned into a villain. Before the end of his shift, he told me, "I'm going to reinflate your cuff now."

"Please don't!" I pleaded.

"What am I going to tell people when you have a complication?" said Ricardo. "You don't want to get me in trouble, do you?" He said it more playfully than defensively, but I was later warned of his excessive caution by another respiratory therapist I had grown to trust.

"Please don't!" I said again, crying piteously as he pulled the syringe from his pocket. "No..."

Ricardo plunged the syringe into the pillowy plastic bulb hanging from my trach. It inflated, and I could speak no more.

I continued to sob as he promised, "As soon as the speech therapist gives the okay, we're going to give you a speaking valve."

The next morning, when Ricardo came on his first rounds, I pointed to my trach and put my hands together in a gesture of begging prayer.

He restored my voice with a pull of a syringe. I broke out in a wide smile and said, "Thank you."

This cycle continued for several days until he finally stopped silencing me.

It was weeks before the speech therapist approved my talking and eating valve. But that only sparked new painful and frustrating dramas, as I continued to periodically lose my ability to speak.



*Keith doubts that All Saints was negligent or too rough in my personal care. He says that the CNAs had struggled to keep me clean due to my rampant diarrhea during my coma. I do admit that my skin has always been sensitive to abrasion, and that undoubtedly factored into my skin irritation. But I also remember hearing my mother muttering like a mantra, "Shithole. What a dump!" over and over again. Keith thinks this may have influenced my impression of All Saints. But if I had known I was in a Catholic nursing home (the name should've been a clue), I would've wanted to transfer anyway.

Wednesday, January 6, 2016

"God is Good," But for What?


The Secular Spectrum: "God is Good," But for What?

I suppose you can say that I violated my policy about avoiding offending the religious. But it wasn't deliberate. I had an instant and visceral response when the priest asked me, "Have you thanked God for your life?"

No!

At least, that would've been my response if I could speak. But my trach prevented that, so I responded with as vigorous a head shake as I could managed, considering my weakened state from six weeks of complete immobility.

I didn't mean to offend him, but I'm not sorry about it either. If he had looked at my chart he would've seen that my religion was listed as atheist (not that atheism is a religion, of course).

Thursday, December 24, 2015

SfMCR: My Voice, Amputated

Though my trach looked awkward, it didn't hurt, But the inability to speak was truly painful.

I have a habit of thinking out loud. Normally, it just makes me seem a little crazy, or annoying, or both. But when, out of habit, I spoke to myself in the ICU, I suddenly realized that I could whisper roughly for the first time since my awakening.

I had been escorted back to ICU from my first nursing home, All Saints Healthcare, via sirened limo to repair my hemorrhaging gastric tube incision. Once I arrived it was Old Home Week, as the medical personnel who had taken care of me during the six weeks of my coma filed in, one by one, to tell me how good I looked. By that they meant, I didn't look like I was a corpse lying in state.

I had spoken during a lull in the parade.

"Am I really talki...?" I tried again, losing gas toward the end. Nope, I wasn't imagining it. I had actually produced sound, despite my tracheostomy. I was, as you can imagine, overjoyed. Being unable to talk was torture for a talkative person like me.

I thought I remembered that some people gain enough mastery to speak despite their trachs, and I figured I had thankfully gained this this ability early.

Over the next few days, my barely audible (and often incomprehensible) speech slowly improved. It was exhausting to produce the sound, taking all my might to force the air out. I could rarely complete a sentence before I ran out of air. This problem was compounded my warp-speed speaking style, which I have difficulty controlling.

Because of this, I still had to resort to mime, exaggerated mouth movements, tracing words on my bedsheet, and all the other silent means of expression I had been employing. But this slight ability to speak nonetheless remained a huge advance for me. Surely, with enough practice, I would eventually get good enough at it to fully regain my ability to communicate.

My hemorrhaging stanched, the hospital prepared to transfer me to my new nursing home, Country Villa Sheraton, which didn't have an opening until then.

A respiratory therapist on his rounds walked into my room. Like all the RTs did, he poked around my trach to inspect it. "Oh, the cuff is deflated," he remarked. "Don't worry, I'll fix it." He then reached into his pocket, then did something to my trach I couldn't see.

I smiled and gave him a nod of thanks as he started to leave.

I had gotten into the habit of deliberately talking to myself to improve my awkward speech.

Nothing came out.

I tried again.

Not even a squeak.

Whatever he had done to me, he had stolen my voice.

Postscript: After I was transferred to Country Villa, I was eager for Keith to inform them about my lost speaking ability. Ricardo, the supervising RT for the afternoon shift, reached into his pocket, then fiddled with my trach.

"Try to say something," said Ricardo.

I was surprised that it could be that simple. I paused a second while I tried to think of what to say. "Can I talk again?" I weakly croaked.

A big smile spread across my face. "Thank you! Thank you! Thank you!"

My trach had a kind of dam called a cuff that prevents air from leaking around the air tube. When deflated, it allows air to be stolen for speech. Cuffs are often deliberated deflated for this reason. In my case, the cuff had become deflated accidentally, but it hadn't been noticed until that RT checked my trach. Even though being silenced felt like an amputation, he was just doing his job when he took my voice away,

Later Ricardo took away my voice again. And again, and again. But that's another story.

Friday, December 4, 2015

SfMCR*: After the Awakening

This is the only photo taken of me at All Saints Healthcare. It was snapped on the day of my transfer, five days before my awakening.
I awoke from a dream of man-eating office machinery right out of the Twilight Zone, only to learn that I had actually been re-enacting Sleeping Beauty. I've told the story of the first moments after my awakening before, but the rest of the day was almost as surreal.

A female doctor walked in to evaluate the state of my cognition. Since I couldn't talk, all she could do was give me a multiple choice quiz. Which of these is the current president: Bill Clinton, George W. Bush, or Barack Obama? This was my first inkling that brain damage was still suspected. I shook my head on the first two and nodded on the last. I made a mental note to make sure everyone could tell that I was completely there.

My mom had explained that my doctors had written me off as a basket case. "The nurses hinting that I should let them pull the plug," she added in her typical blunt manner. She also stated that I had been a quadriplegic. Though I could barely lift my arms and legs, I did have a slight amount of movement. This didn't make any sense to me. My spinal cord had obviously not been damaged. How could this be? This statement only added to my perplexity. [She still says this. I think she bases her conclusion on my lack of movement during my coma. As a hyperactive person, I had always fidgeted and moved while awake. Though I was covertly aware during my coma, I wasn't fully awake. If I had been conscious, but paralyzed, I would've been in a lock-in state, not vegetative.] 

Though I was sure I had no signs of brain damage, confusion reigned as I tried to make sense of the mish mash of the details that trickled out about my illness.

Soon, a priest appeared and told me, "God is good," as I've written about before. My mom, who is also an atheist, was trying to be polite when she allowed him to come to my side. I, in turn, acquiesced with a slight nod of my head when he as asked me if he could pray for me. It made me feel extremely uncomfortable. Thankfully, he soon left.

My mother was obviously excited at my awakening, but sometimes she talks so much that details can get buried in the mix. This only added to my confusion. I was already getting an inkling of what my loved ones had gone through, however. My mom told me there had been a constant vigil by my side, a fact which a nurse confirmed. Keith would be coming by after work, my mom informed me. I couldn't wait for him to get there. I knew he would be happy.

When Keith arrived, I could hear the joy and relief in his voice. I only wish I could've seen his expression; I'm extremely nearsighted and I didn't have my contacts or glasses. A vegetable has no need for corrective lenses. Keith vowed to bring my glasses to me the next day. Though I couldn't see fine details, I could make out the breadth of his smile.

He told me that all my friends on Friends of the Mountain Dulcimer were rooting for me, and there was a separate cheering section on Facebook. "I can't wait to tell everyone you're back. Completely back." The relief in his voice was obvious.

Meanwhile, I mugged like a silent movie actor, trying to seem as vibrant and aware as possible. I did my best to display my sense of humor, through exaggerated facial expressions, comically timed looks, and a few mouthed words, which were often misunderstood. I wanted everyone to know that I was still completely me. Given my limited comic palette, I was at a considerable disadvantage in this endeavor. My humor is usually verbal.

As I continued to overemphasize my thereness, I stayed so animated that I quickly became exhausted. Yet I kept it up, anyway. I had to make sure everyone knew my mind was undamaged. Keith clearly couldn't get over the fact that my mind was still clearly intact. He had heard all the same discouraging things from my doctors.

And all the time, I struggled to piece together the picture of what had happened. Had I been in a coma six months or six weeks? [I think the confusion stemmed from my mother rounding up to two months, while Keith referred to it as the more precise six weeks. My mind conflated the two.] Why were objects labeled as belonging to "All Saints," when I had spent my coma in the Kaiser Panorama City hospital? No one thought to inform me (because they already knew) that I had been transferred to a nursing home only five days before my awakening. [As I've referred to repeatedly, it was the very activity involved with that move which sparked my awakening.]

Eventually, Keith had to go home and scarf down a quick dinner, then catch a few hours sleep...as he'd been doing for the previous six weeks.

I felt all but dead, wrung out by my forced activity in my coma-weakened state. But I awoke the next morning. And the next morning. And the following morning as well.




*SfMCR stands for Scenes from My Coma Recovery. This post is part of a continuing series of vignettes from my recovery.

Monday, September 21, 2015

All Saints; one "none"

Godless at the hospital.
At All Saints Healthcare, five days before my awakening. Sill godless.
In my hospital records, my religion is listed as atheism. Leaving aside that fact that atheism isn't a religion, you would think that would've hung a big No Solicitations sign over my bed to clergy on their ministering rounds. But the day I awoke from my coma, I was visited by the nursing home's resident priest. He sat down beside me and asked me if he could hold my hand. I nodded, though I've always felt uncomfortable with physical contact with complete strangers, even when I didn't have dermatomyositis sore-covered hands wrapped in bandages. At least I wasn't an altar boy. Sorry, I had to make a crack. Now you know why I've always been afraid of saying the wrong thing around the religious.

As he gently took my hand in his, he said, "God is good." Oy! I fixed my eyes on him to prevent them from rolling. (He was the first of countless others who have called my recovery a miracle. I've probably the only atheist who has strengthened the faith of more believers than Richard Dawkins.)

"Do you remember me?" he continued. I didn't, but I nodded anyway, trying to be accommodating. I felt awkward around him. My tracheostomy tube prevented me from speaking, so at least there was no danger that I would accidentally blurt out something offensive. For that reason, among many others (hello...atheist!), I've always demurred when a hospital chaplain asked if I wanted to speak with them. This time, I couldn't just say no.

He smiled at me. "Have you thanked God for your life?" I was literally speechless. "No!" I wanted to say, but all I could do was vigorously shake my head. He looked as if I had slapped him in the face. What was I supposed to say? "Thanks, God, for saving my life after you almost killed me. Oh, that's right, I don't believe in you, anyway." He soon took his leave of this ungrateful atheist, but not before asking me if he could pray for me. As I've said of my friends' prayers (which I didn't yet know about), prayers are more for the prayer, so I nodded. It seemed harmless enough, and I still trying to remain polite.

I wanted to squirm, but I was so weak could barely move. It felt like he was praying at me, not for me. I didn't know why I was being subjected to this visit, and I couldn't wait for it to end. Certainly, my Jewish-atheist mother, who had been there for my awakening, hadn't asked for him. As I eventually learned, the nursing home where I had stayed for five days, after being transferred from the hospital, was called All Saints Healthcare for a reason. It's a Catholic nursing home. I guess No Saints Healthcare wasn't an option?

But this problem started in the secular Kaiser hospital where I spent the bulk of the six weeks of my coma. That story will be told in Wednesday's blog. You'll see why my attitude--at least when it didn't involve my friends' prayers--was closer Eric Wojciechowski's take in his essay, "Please Stop Praying for Me," which was paired with my essay, "Without a Prayer of a Chance," in the October/November issue of Free Inquiry.

Have you had a similar experience with hospital or nursing home clergy? Share your story in the comments section!

Click here for Part 2: Saving my life by saving my soul?

Monday, August 24, 2015

Minimally conscious...and it wasn't even morning

This photo was taken at All Saints Healthcare on the day the evaluation I refer to was written.

On Friday I went on an exhausting and frustrating wild goose chase through the sprawling Kaiser Permanente Panorama City Hospital campus in an attempt to request my hospital records. The complex has undergone extensive building and reorganizing, so I kept being routed to the wrong buildings. My mother figured out that I had been to all but one of them. This was complicated by my previous odyssey to obtain my hospital and nursing home records. Then, too, I was redirected repeatedly and incorrectly. When I was sent to the place where I eventually wound up requesting the records, I headed right out again because it was the same office where I had been misdirected the first time. That was eight months ago, however, and now it was the correct location. After I finally found the right office that time, I had to wait a few days to receive the records on a DVD. When I picked them up, at a cost of $15, I didn't check them right away because I only needed them for when was ready to started writing my memoir.

Eventually, I promised to send a copy to Dr. Adrian Owen to help him understand my case. As I previously mentioned, I'm going to be helping him by answering some questions about my covert cognition experience as he writes a book for the popular market. Unfortunately, when I fed the DVD into my computer, I found that I had been given the records from my 2014 Legionnaires' disease hospitalization. I don't think the fact that they were both legionella cases had anything to do with it, as rare as this bacterial infection may be. She just gave me the records from the second hospitalization in 2013, when I returned to the hospital from All Saints Healthcare, the nursing home Kaiser had transferred me to only six days before. I was back at the hospital to stop the bleeding from my gastric tube. She had also included the records from my 2014 hospitalization sequel, Legionnaires' Disease: The Revenge. Thus, the literal run-around...again. Now I'm going to have to pay that $15 fee again. Yeah, that's not fair, but it's not worth arguing about. I need those records!

The other odd thing is that the records were missing two days from my short stay at All Saints. I'm missing the day before I awoke and the day of my awakening. The first missing day is exactly two years ago today. Tomorrow is the the second anniversary of Coma Day--the day of my awakening. That's gone too.

Yup, the two most important days are missing. I'm awaiting a callback from All Saints to see if they have the records. But reviewing the records I do have gave me a bit of shock. It says that I was opening my eyes and responding to simple commands five days before Coma Day. That means that I was at that point in a minimally conscious state. That's not the surprising part; I suspected as much. However, my loved ones would've liked to have known that the doctors were now saying that my altered mental status was improving. They could see that for themselves, but until then my doctors had always pooh-poohed their observations of my increasing awareness. Indeed, the doctor who wrote these notes told Keith that I wasn't the same patient described in my medical records. In her notes, she deemed my rehab potential to be fair. That's a whole lot better than the previous predictions that I would at best be left a hopeless vegetable. This change in evaluation is due to the fact that people in minimally conscious states are far more likely to effect a full recovery. You know, like I have. I wish my loved ones had known that!

What other surprises await in the records from those two days?

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Coma Girl

Coma Girl

Not a miracle recovery, but a miracle of modern medicine

In 2013 I fell into a six-week coma and nearly died after I contracted legionella. The Legionnaire's disease was in turn triggered by immunosuppression caused by the prednisone I was taking for my rare autoimmune disease, dermatomyositis.

I suffered a series of strokes on both sides of my brain when the sepsis caused my blood pressure to plummet. I fell into a deep coma. My kidneys and lungs began to fail, as my body was began dying one organ at a time. My doctors told my loved ones to give up hope for my full recovery. They expected me to die, and even if I somehow lived, I would remain a vegetable or at best left so hopelessly brain-damaged that I would never be same. But unbeknownst to them, while they were shining lights in my eyes and shaking their heads, I was telling them in my coma-dream--my secular version of a near-death experience--to leave me alone because I was trying to get back to sleep. I was experiencing what is known as covert cognition, the subject of my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," which appeared in their July/August issue.

But it wasn't a miracle--despite what so many continue to believe--that I recovered so fully. I owe my life not to God, but the miracles of modern medicine, as well as the nature of the watershed-area brain damage I suffered, as I detailed in my article and in this blog.