Wednesday, May 20, 2020

I Knew

I had some experience with feeding tubes before I got mine. The experience came from the kids I saw.

I used to work in a care home. It was for developmentally disabled children that were beyond their medical needs but still required substantial care. There was one boy who was difficult to feed. He was about 9. When he was born, his umbilical cord was wrapped  around his neck. The delivering doctor was also drunk. 

While I was at this care home, this little boy had surgery to put in a feeding tube. Going by the rules, this boy had to leave the home. He was moved up a level of care. He would have to go to a facility requiring nursing licensure.

A year or two later I was a social worker for developmentally disabled children. I was a service coordinator. These kids usually got more than one service. Parents were overwhelmed... if the child was still with them. It was common for disabled children to be placed in care homes and institutions. 

I had to check on a little girl who was 4. She had a twin sister who was in preschool during my visit. The disabled twin was at home. When I saw her, she looked like a toddler. She wasn't walking and was in a large baby carrier. The biggest medical issue was that she was tube-fed. The mother showed me how it was done. She was confident and well-taught. She had no issues in meeting her child's needs.

It has been unusual to see a child with a feeding tube at home. That has been slowly changing. People aren't as scared of the device anymore. The feeding tube is like an IV but the feeding tube carries a nutritious formula, usually. This formula goes to the stomach. There are no blood vessels involved in the feeding process.

Changes and care is provided by a trained professional. This might be a family member, but in my case and many others, it is a doctor.

Wednesday, April 29, 2020

When Did You Come Out of the Coma?

Initially, I couldn't understand why I was in a coma. Now, I think it's hilarious. The policy is wrong. I'm now asked. This is even funnier now that I am asked. You tell me when I came out of a coma.

I'll illustrate why I am in a coma. I grew up being told that the brain doesn't heal and regenerate. I was told that a person was born with a certain amount of brain cells. Drink a beer and they were gone. So you shouldn't drink alcohol.

My brain bleed killed lots of cells. It killed so many that my initial report says that I am brain dead. Going with that belief that the brain doesn't replace cells would mean that I am still the same- I am brain dead and in a coma.

Since the government goes by this policy and they are my primary, my paperwork has not changed. I'm still in a coma on paperwork.

I came out of a coma I believe in mid-January 2003.  I opened one eye. I couldn't move. I couldn't speak. I was made vegetative, PVS.

PVS, or Persistent Vegetative State, is just a continuation of the original coma but the eyes are now open. I'm still in this open-eye coma. I may have opened my eyes, but  the coma remains. 

Written documentation must have stopped because I have remained this same way on paper for years. PVS is close to death. Documenters must think I am dead now.

I'm not dead.

I've taken this time to get better...on my own. I am not in a hospital. (So far, it has been 14 years out of a hospital. At this point, one must think that I have magic powers. I don't have those powers. I've had years of training and experience in community care. That's not magic.)

To the initial question, I am still in a coma as far as I know.


The following shows a Swallow Study.

had an initial swallow study 17 years ago. It went like the video, but my memories are more feelings than  procedure. (This shows brain development. I did not have the capacity to remember procedure.)

Alas, I did not have the capacity to swallow, either. I was instructed to tell nurses that I was NPO. I didn't know what this stood for. I think it's Latin, but I made up "Not Per Oral."

A few years ago my feeding supplies were cut off. I got a feeling that it was due to pure bureaucracy. A doctor wouldn't stop tube feeding, but a bureaucrat would. Somebody thought I was all better, or dead.

In order to get the feeding tube supplies turned back on I was scheduled for a swallow study at my local hospital. A Speech Therapist wasn't  ordered. A doctor wouldn't have missed this. A bureaucrat would.

The hospital Speech Therapist stepped in. He did the test. I heard him say something, though. "She closes her airway." He wouldn't know that I didn't 17 years ago. The interventionist in me jumped in (I used to do infant intervention). "Can I have lollipops?"  

Lollipops are a speech therapist's tool to teach swallowing in young children. That's how I was approved for lollipops. I've since found a few things on-line for adults and lollipops.


I don't know what swallowing has to do with consciousness, but I doubt that I am not "Not Conscious" anymore. Since I didn't swallow, though, I am still in a coma.

Wednesday, April 22, 2020

Clean My Room

The surgery at Stanford cleaned out my cerebellum. The doctor didn't know he was doing room prep. He was cleaning out the area for my cerebellum to grow. It takes the brain 18 years to grow (approximately) so that's why it has been so long.

"it will be a slow process, because one will have to wait about 18 years to see the effect of changes"

Surgery was in 2004 at Stanford. An AVM and damage were removed from my cerebellum. 

It has been a long time.

Thursday, April 16, 2020

Behaviors in Severe Brain Injury

Which Behaviors Are First to Emerge During Recovery of Consciousness After Severe Brain Injury? Robert Demichelis II

There was an article on alcohol intoxication attached to this question. I didn't include it. A severe injury is not like a mild or moderate one. Alcoholism is less likely in the very severe due to mobility issues.  Alcohol is also banned from care institutions.

From my browser, "Severe brain injurySevere brain injury is usually defined as being a condition where the patient has been in an unconscious state for 6 hours or more, or a post-traumatic amnesia of 24 hours or more. These patients are likely to be hospitalized and receive rehabilitation once the acute phase has passed."

 A person with a severe injury may never leave the medical setting. It's common for a wheelchair or gurney to be used. Gurney patients usually don't live long. Patients who do leave usually have family or friends involved in medical care. (I still have a nurse, and it's almost 18 years after the stroke.)

Return of consciousness has not been documented in the severe brain injured that were deemed vegetative (PVS). I differ with this opinion. I've been in the care facilities. There are severely disabled persons that appear to have regained consciousness, but cannot communicate. I type this with one finger. I am not conscious by diagnosis. I do not swallow on given tests. 

Behaviors aren't too hard to control in the severely disabled. Crying and laughter are common from what I've seen. This man cries.

To note, this man died soon after. 

I think those that have recovered, died, or were so disabled that they couldn't communicate. I haven't died and I slowly communicate, but I haven't recovered on paper either.

Saturday, April 11, 2020

I Am Not Paralyzed Anymore

To say that I am quadriplegic is just flat out wrong. I need to be re-evaluated for RESIDUAL QUADRIPARESIS, because Hell if I am still Quadriplegic. I move everything now. I'm just not strong enough to bear weight.

An occupational therapist helped me find the term.

If I am quadriplegic, then how am I typing this? Yes, I am motor impaired, but I am not paralyzed. I use one finger to type.


The picture above is an exercise I did in rehab 17 years ago.

I continued with using that particular movement for the last 17 years because it is easier for diaper changing. I was showing a CNA what I learned in Physical Therapy. She had me push up for diaper changing and the skill has remained.


Few know this, but when I opened my eyes, I was in SCI, Spinal Cord Injury. I did not break my spinal cord, but injury was so severe that my initial presentation appeared to be quadriplegic.

Movement is a miracle. I do move everything now. Movement is just weak. I can't support my body to stand.

I still maintain that my body released adult stem cells. My development looks like the videos I have seen of quadriplegics who successfully receive stem cell therapy.

The man in the video had stem cell therapy.


Why is it taking so long?

It's mostly a paperwork issue, I think. The computer system could have been set up not to record a new diagnosis, but I have yet to receive a new diagnosis. I'm not sure what the problem is.

With the old diagnosis. A person usually dies. I should be dead by now.

This might be why it's so long. I'm dead... on paper. If a ghost was writing, that would be a different problem. 

I don't know what the hang-up is. I've recently enlisted help from my local state government to deal with this federal issue. That would be my successful application for Brain Injury Medicaid Waiver. We'll see what happens.

Thursday, April 2, 2020

My Speech Keeps Improving

April 1, 2020
People watch these and are amazed by improvement each time.

I say the improvement in speech production is due to the surgery I had at Stanford. It re-opened the speech learning window.
Surgery was 15 years ago. My cerebellum was cleared of scar tissue and damage. It took me 15 years to grow neurons.

This growing of brain cells is what is controversial. If I didn't grow brain cells, then how am I talking?

I have not had any speech therapy.

I use lollipops to keep me on track. Lollipops can be a useful tool in early speech development. The same goes for re-learning speech. Just look for "grown-up" flavors.



Saturday, March 28, 2020


My In-Home Support Services social worker had to get papers signed. She had on the full protective clothing garb-- gloves and a face mask. I'm glad that she did this. The people around me can see just how serious my condition really is. 

I don't require the people I know to wear a face mask unless they are visibly sick and I have masks available. I have gloves for when I have procedures. I have to have nutrition daily. That's a procedure. This requires gloves. I try to keep gloves available.

The masks and gloves are for MY protection, not yours. People with immune deficiency can die from something  as simple as a cold. So to everybody who ran out and got them in this crisis, thank you. Keep your germs to yourself. (I've been dripped on. Ewe that's gross!)

The  government isn't responsible for me being alive. I would have died by now with that policy. A small university that does research did the procedure to keep me alive. I was just research on the technique of removal of vascular anomalies in the brain. They weren't concerned with my early development. They knew nothing about when I was a kid!

I bet that university was surprised when I started tagging them in posts on social media. It had been years since a surgery. It has been 15 years.

Romeo is 14/15 and Juliet is 13.(This is from my browser.)  For me,15 years after surgery isn't a far fetched notion to contact people, if my brain was growing. Kids can get into relationships and I could talk on the internet. It appeared to me that my brain had grown.

That's a big one. Some theory, especially the government, prescribes to the notion that there can be no brain growth after an injury.


Use those masks and gloves. (If you have them.)

Those two things will protect others. I'd think you would get some protection. According to professionals, though, you have to add goggles or protective eye-wear. Nothing can be open on the sides. There must be a tight seal. (Guys, you can't have beards.)

You need to be HAZMAT ready.