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: 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.