SfMCR: The final battle to speak

In my coma-dream, suctioning was represented as being immersed in a tank filled with science fiction-inspired oxygen-permeated gel, which I could barely suck into my airways. Once awake, it felt like my lungs were being sucked out with a vacuum. Still, the plugs in my lungs were getting so bad that I kept having to give in and ask to be suctioned.

But suffering through the waterboarding-like suctioning wasn't the worst travail I was facing.

The morning after my breathing crisis caused by the plugs (see SfMCR: Struggling to breathe because of my trach), Ricardo came to my bed and said, "We're going to remove your speaking valve."

As if a dam had burst, tears instantly poured forth. "Please don't." I interpreted that as meaning they were going to remove it permanently, silencing me once again. "I need it!"

"But we have to. We have no choice. The valve is what's causing the plugs to form."*

"Isn't there something else we can do? I have to be able to speak," I sniffled.

"If we keep it in, it's going to delay your recovery. Don't you want to get better?"

I paused to think of a way out of this. Suddenly, a solution popped into my mind, "What if I let you take it out between visits?" My loved ones visited me in regular shifts, and that's when I most needed to communicate well the most.

He looked at me a minute, and said, "We can try that." Ricardo didn't look enthused. "But if you continue with the plugs, we're going to have to take it out."

And thus, when my visitors arrived, I would ring for an RT to reinsert my Passy-Muir valve, and when they left, I would signal again for the valve to be removed.

In between, I had to do my best to communicate with medical personnel using leak talking, which is as difficult to understand as it is to produce.

This was complicated by my warp-speed speaking style, which is related to my ADHD. Try as I might, I just couldn't force myself to slow down my speech or break my comments into shorter utterances. The best I could manage was to reduce the speed to subsonic.

This was a particular problem when trying to communicate with physical and occupational therapists because doing the exercises sapped me of precious breath.

Still, it was worth it to be able to continue speaking normally with my loved ones.

I was on powerful (and painful) intravenous antibiotics. Every time the younger nurse administered it to me, I had to fight back tears from the searing pain. The older, more experienced, nurse knew how to slowly feed the antibiotic into the catheter so it didn't hurt as badly.

But the excruciating injections paid off. Before long, I tested free of MRSA, and I wasn't an untouchable anymore.

A couple of weeks later, I no longer needed the speaking valve. Ricardo finally removed my trach.

As he was taking it out, Ricardo said he had known I was ready to have it out for some time. Later that day, Joseph broke into a big smile when he saw me without the trach. He told me that he could always tell when patients are ready for decannulation, and he had known that I was from the start. That's why, when it looked like he would be leaving Country Villa Sheraton, he warned me of Ricardo's excessive caution and advised to keep pushing for further weaning.

After my trach was disconnected from the ventilator. They fed me supplemental oxygen as a precaution. 

If I had been weaned faster, I wouldn't have needed the speaking valve for nearly as long, and most of this frustrating saga never would've occurred.**

After I had been red-capped, in preparation for decannulation.

*As I said in my last post, the folks at Passy-Muir, makers of the talking and eating valve, tell me that if my ventilator had been properly humidified, it would've prevented the formation of plugs. I will delve further into this subject in the next installment in this Scenes from My Coma Recovery series. Here is Part One, Part Two, Part Three, and a related SfMCR: Gaining the Power of the Pen.

**On the other hand, I also wouldn't have sold the essay I wrote about the drama of repeatedly losing my ability to speak. "Voiceless" will appear in Kaleidoscope, a semi-annual online literary magazine about disability, in either in July of 2017 or January, 2018. I will post a link to the essay when it comes out, so watch this space...eventually.

Enjoying a tater tot after the decannulation. I was wearing a shirt because that afternoon I had gone on a walk outside the nursing home.

SfMCR: Struggling to breathe because of my trach

At least my dexterity had improved enough for me to suction the plugs from my mouth myself.

After all of the dramas I had suffered in my struggle to speak, you would think I had finally come to the end of my speech travails when Keith bought me a replacement for the talking and eating valve--aka Passy-Muir valve--which had been carelessly thrown away with my used trach.

You would be wrong.

Within a week or so after the replacement speaking valve was put in, I came down with pneumonia. Not just any pneumonia, but the dreaded MRSA--Methicillin-resistant Staphylococcus aureus. That meant that I was Typhoid Stephanie. All visitors had to dawn sterile gowns and masks before seeing me.

Even worse, I was barred from the "gym," as the physical therapy room was called. I had no access to the exercise equipment that would help strengthen my coma-weakened muscles. The PTs went

The balloon was there for my physical therapy.

into my room to give me the limited therapy they could provide there. I had to leave the nursing home at the end of the next month or lose my Kaiser coverage, and I still couldn't walk.

The clock was ticking. But that was far from all.

The phlegm from the pneumonia was forming into thick plugs, which clogged my breathing tube. Trachs make it harder for you to cough up phlegm.Thus, it was actually impairing my ability to breathe. The irony is that it was becoming increasingly clear that I didn't need the trach anymore (a fact Ricardo admitted when he finally removed my trach a month later).

Joseph, a big, bald-pated Jamaican respiratory therapist explained in his sing-song Caribbean lilt, "It's your your speaking valve, my dear. The valve dries out the mucus, making it form into plugs."*

But I wasn't about to give up my hard-won ability to talk.

I had already grown to trust Joseph, who prided himself on how many patients he had talked through breathing crises. Being a skeptic, I initially doubted his self-assessment until I saw it for myself (and with myself). He calmly talked me through more than one such crisis, as he did with Vilma, the fellow coma survivor I shared my room with.

One day, the plugs just wouldn't stop coming. Some of them were huge, clogging the suction tube so badly that Joseph had to open it up to remove the plugs with saline and swabs. (Um, maybe I should've warned you that this post isn't for the squeamish. Sorry!) They were tinged brown because my trach had be suctioned so frequently that my throat had become irritated. (I know, blech. Sorry again!)

And speaking of irritation, Joseph spent his entire shift shuttling back to my bed to suction me yet again. All day, I continually hacked as deeply as I could to bring up the plugs. Sometimes they would shoot out of my mouth like spitballs. We should've set up targets.

As much as I could, I tried to clear them myself by coughing and by suctioning my mouth and upper throat with a long plastic wand (see above photo). I hated having my trach suctioned because it was uncomfortable and little scary--it felt like the RT was sucking my breath away. It was a bit like being waterboarded, actually, though the only thing they're trying to extract from me was phlegm.

Joseph was reluctant to suction the trach too often because of the increasing throat abrasion. He therefore encouraged me to cough them up myself when I could. My chest was beginning to feel like my ribs were boring their way through the skin. I was physically spent, yet every time I started to have trouble breathing, I had no choice but to begin hocking yet again.

At one point, even suctioning couldn't seem to clear my trach. I coughed and I coughed and I coughed some more until I was hyperventilating so much even the ventilator couldn't keep up. What's worse, since my awakening I had been plagued with frequent bouts of painful chest spasms, which coughing often triggered.Whenever my chest spasmed, my hyperventilation worsened.

Now I was scared. And the more nervous I got, the worse the hyperventilation became. Joseph had told me of a heartbreaking case in which he couldn't calm a panicked patient, who eventually died.

I wasn't panicking...yet. Still, the story was meant to illustrate the very real dangers of a breathing crisis.

But Joseph's soothing manner relaxed me. I focused on imagining a particularly peaceful scene with Keith at an ancient Greek ruin Sicily. As I calmed down, my breathing became more regular. With a several forceful coughs, I expelled the plug restricting my airway.

At the end of the day, with my last bit of physical reserves spent, I gave in and allowed them to remove my speaking valve before I went to bed.

But that still wasn't the end....

*The Passy-Muir people tell me that the plug problem could've been solved if the nursing home had only humidified the ventilator air. That makes sense. I'll get into that subject in my next installment of this SfMCR series. Here is Part One, Part Two, Part Three, and a related SfMCR: Gaining the Power of the Pen.

SfMCR: My voice, trashed

It was a triumph when the nursing home speech therapist finally approved a talking and eating valve for me, also known as a Passy-Muir valve.

But less than a week after I started using the voice-giving valve, it was literally snatched away from me.

Every night in the nursing home, I was awoken for a blood test or to check my trach. One night, a respiratory therapist woke me up to change my trach, Afterwards, I went back to sleep. But when I awoke in the morning and tried to say something, I could barely make a croak.

I took a drink of apple juice and tried again.

Nothing.

Maybe it was congestion? I summoned Ricardo using the call button. When he arrived, I gasped out a request for a breathing treatment.

Afterward, I tried to cough up as much phlegm as I could.

Still, no sound came out beyond what I could eke out before I received the valve. I took another drink. Nada. So I pressed the call button.

"What is it again?" asked Ricardo.

"I can't talk," I told him.

He unhooked the tube leading into my trach. "Your speaking valve is missing! What happened?"

I shrugged. Then I remembered, "Last night someone...woke me up to...change my trach." I was doing my best to take breaths between words, but as usual, I wound up trying to say too much between breaths.

We immediately realized what had undoubtedly happened. The valve had been tossed into the trash with my old trach.

"Who did this?" Ricardo said, clearly pissed.

I shrugged as I shook my head, instinctively returning to the mime I had perfected when I could barely speak.

At first I hoped it might be possible to retrieve the valve, but it soon became clear that this was impossible.

My hard-won valve was now medical waste.

"Do you know how expensive those valves are?!" the incensed Ricardo exclaimed. "I'm going to find out who did this to you. This shouldn't have happened. Carelessness like this is unacceptable!" Ricardo was a pretty even-tempered person, and this was about as close to raging as he got.

"When can I get a new o...?"

"I'll have to check. We don't normally keep many of these in stock."

As it turned out, they didn't have another valve. When I asked the next day, Ricardo told me they were ordering a new one.

The next week, he said they had ordered it, but it hadn't arrived yet. The week after that, he said he would check into what the hold-up was.

Each day, the first time I saw Ricardo in the morning, I would ask him about the valve.

"I'm sorry, it's still not here," he would tell me after he had checked the storeroom.

Eventually, Keith found a company that sold Passy-Muir valves on Amazon. He paid for it out of his own pocket, including the rush shipping.

Finally, I had my voice back...again.

It wasn't long, however, before my valve was threatened yet again.

Here are the previous installments in this Scenes from My Coma Recovery series: Part One; Part Two; and a related SfMCR: Gaining the power of the pen.

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.

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.

SfMCR: Gaining the Power of the Pen

Days later, tapping out words one letter at a time on my Kindle. You can see the awkward way I was grasping the stylus, just as I was holding the pen.

I've always been talkative. So you can imagine what hell it was for me when I woke up from my coma unable to speak due to my tracheostomy.

I immediately began mouthing words. But more often than not, even with my exaggerated mouth motions, I was misunderstood. I became adept at mime. I traced words on my bedsheet. In short, I did everything I could think of to communicate. Yet too often, it was just not enough.

Even after I gained the ability to speak roughly in short, barely audible whispers when the cuff in my trach was deflated, my speech was so difficult to understand that it was often no better than complete silence. (It's a long story that I will write about in a future post.)

My inability to speak was a particular problem because I was often in a lot of pain. I simply couldn't communicate what would make me feel more comfortable.

Because I had a pressure ulcer--also known a bedsore--from my six-week coma, CNAs would shift my position every hour or two. They did this by propping me up with pillows. At first it would feel okay, but soon I would start cramping up from the awkward position my muscles were forced into. I tried to indicate with arm movements the pillow position I thought might relieve the pain. But because I couldn't speak, they frequently couldn't understand what I was trying to suggest. This, understandably made me feel incredibly frustrated.

One time, as pain shot through my hip and thigh, I tried yet again to indicate where to place the pillows. The CNA placed the pillows in exactly the right spot...to increase the pain. As usual, it didn't hurt at first, but the pain soon became unbearable. I pressed the call button, and when she returned, I attempted to indicate how I could be made more comfortable.

She tried again. The position wasn't what I was thinking of. Even though didn't think it was right, I decided to give a shot. And speaking of shots, that's what the pain soon did through my body. I didn't want to complain right away, so I waited, hoping that the pain would eventually subside, Instead, it grew and grew until I couldn't stand it any longer. I pressed the button yet again.

"Yes?" the CNA said with a sigh when she showed up minutes later.

Suddenly, an inspirations struck. I laid my left hand flat, held the pointed index finger and thumb on my right hand together, then mimed squiggling above the left hand. In other words, I was attempting to get her to understand that I wanted to write down a note.

"Do you want me to change you?" she asked.

I shook my head.

"I want a pen and paper." I repeated the pantomime.

"You want to be turned?"

I shook my head vigorously. Slowly, I mouthed, "Pen and paper," annunciating and exaggerating every syllable, as I performed the scribbling motions.

"Your arm hurts?" she guessed.

"NO!" I mouthed. "P-e-n a-n-d p-a-p-e-r," I said, drawing out the words. I drew my imaginary pen across my mock paper once again.

My loved ones had a rotating schedule of visitation, and it was Joella's shift. "You want a pain pill?" she hazarded.

I shook my head so hard that I felt dizzy. "Pen and paper! Pen and paper!" I said. I traced the words on my bedsheet for good measure, substituting an ampersand for the and.

"Let me get the nurse," the CNA said. She was obviously feeling almost as exasperated as I was.

 Several minutes later, she brought back a nurse.

"What seems to be the problem?" the nurse asked.

I held the invisible pen between my fingers and mimed a cursive note on my flat palm yet again.

"Do you need to be changed?"

"P-e-n a-n-d p-a-p-e-r! P-e-n a-n-d p-a-p-e-r! P-e-n a-n-d p-a-p-e-r!"

"It's okay. Calm down."

I decided to try a different tack. I air wrote without my imaginary paper while I mouthed, "W-r-i-t-e! W-r-i-t-e! W-r-i-t-e!"

"You want to be turned?"

"Argh!!!!!!" I said, or rather tried to say. It was kind of hard to transmit via mouthing.

"I'll go find someone," Joella said, standing up.

I smiled and gave her a nod of thanks.

She returned with Ricardo, the head respiratory therapist on duty.

I returned to pretending to write on my hand/paper. "P-e-n a-n-d p-a-p-e-r! P-e-n a-n-d p-a-p-e-r!"

Ricardo's eyebrows drew together. "I'm not sure...."

I decided to switch to air writing. "W-r-i-t-e! W-r-i-t-e! W-r-i-t-e!"

He thought for a moment. "Do you want to something to write with?"

I nodded so vigorously that the room continued bouncing even when I was finished.

Ricardo left to continue his rounds, and in a few minutes, the CNA handed me a pen and a piece of paper. The wheeled bed tray became my desk. My hands were still barely functional, so I balanced the pen between my fingers awkwardly as I roughly scratched down my thoughts. I kept misforming letters, so I was continually crossing out words.

In the end, the resulting scribbles looked like they had been written by a first grader. But finally, I had the power of the pen.


This post is

Silence is not always golden

One thing that continues to puzzle me about the two times I had tubes down my throat that prevented me from talking: Why is it that the means to communicate weren't immediately provided to me? Surely I wasn't the first patient who ever wanted to express their wishes when they had a trach or were intubated. In my ICU room during my second bout of Legionnaires' disease, I had to write on a white board covered with smiley and frowny faces to indicate levels of pain and a simple alphabet for laboriously pointing to one letter at a time. I wrote on the margins because there was no room to request an extra pillow, ask a question, or answer a doctor's question, let alone communicate with loved ones. How can a person with ADHD--who talks at warp speed--express her thoughts one letter at a time? Still, that was an improvement over when I awoke from my coma with a tracheostomy tube in my throat.

That time, my loved ones had never had to face this kind of situation before. But what about the medical staff? Yes, I had trouble moving my hand after I awoke from the coma, but I could've managed some roughly scratched words. And yes, patients in my situation are often incapable of communication due to brain damage. But a woman I shared my room with in the nursing home was also recovering from a coma with her intellect intact. Her friend brought her a child's Magic Slate toy that she could clear by lifting the plastic cover sheet. I had to try innumerable times over a couple of days to mime writing with a pencil and paper before someone finally guessed what I wanted. No one in the nursing staff figured that we might want a way to convey our needs? Or express thoughts of any kind?

It's true that many people in the nursing home have trouble communicating due to Alzheimer's disease, but there were plenty of others who had no mental deficits. Shouldn't every mentally competent person who can't speak be handed an empty white board, or at least a pad of paper and a pen?

Maybe it has something to do with the dehumanization of patients. Or, maybe they can't complain because no one has provided the means to do it.