A few weeks ago, I was contacted by a strong woman who’s son is currently comatose. I want to share a letter that my mom recently sent to her. This isn’t the first letter that my mother and I have fielded from a parent whose child is comatose and I know that it will not be the last.

This incredibly strong mother and I sent emails back and forth and I CC’d my mom because I knew that, while it may be a bit traumatic for her to revisit those days in which my survival was unlikely, she could relate to the situation that this woman is in. One of the thousands of amazing attributes of my mom is her complete willingness and eagerness to help others in a position that she has been through. I share this attribute.

I am removing the names of those other than my mother and I from this letter, and I am sharing it publicly to provide assistance to parents or loved ones who are going through what my mother or I have been through. My mom and I feel extremely fortunate and intend to pay our fortune forward. While we both are busy in our own affairs, we both want to share our experience, strength, and hope. I can always be contacted here.

From One Mama Lion to Another

Dear ———,

Cavin’s mother here… I have read the emails that you sent to Cavin through finding him on the internet, and wanted to respond, but wanted to do so when I had gathered my thoughts.  He has been contacted by many people who are in your shoes, and I am pleased that he has made himself so accessible.  

First of all I want to express my heartfelt acknowledgement and condolences for what you and your family have been through. As you know, I was on the “next plane” to him, and stayed until I could bring him to my home in another state.

Cavin somewhat minimizes his time in which he was “medically” unstable. By that I mean that he didn’t understand how injured he was. Though Cavin states that he was in a coma for 12 days, he was in one far longer than that, as they had to do an emergency intubation and medically induce a second coma for another 10 days 5 weeks later, when he developed breathing problems that almost killed him. They were treating him for asthma and anxiety, when in fact he had so much scarring In his trachea that 3 inches of it had been reduced to the size of a drinking straw.

It was a full five months before I could bring him to my home. He was domiciled in NYC and “just” met the requirements for Medicaid. I failed to apply for SSD during that period because I was counseled by New York to do so after I took him to Texas. This was because, in their eyes, he would surely qualify (due to poor prognosis). It turned our that was a big mistake… So if you haven’t applied for SSD, please do so immediately.

The next hurdle was moving him from a trauma hospital where there was no real rehab department to a subacute 

care facility with a brain injury rehabilitation program. The hospital social worker applied for him to be transferred to a different sub acute care facility for brain injury, but after I specifically requested Mt Sinai, they moved him there. 

After Gabby Giffords was placed at TIIR in Houston, I knew that they had put her in the best facility there was. My research showed me that there are only a handful of these facilities in the nation. Here are links.

https://www.biausa.org/tbims.htm

https://www.msktc.org/tbi/model-system-centers

The fact that your son is responding to commands and able to do the things you ask should qualify him for one of these programs, but you have to specifically request the facility where you would like him to be placed.

It sounds like you are very much on top of things. One thing that puzzles me though, is whether they have done an MRI on your son. An MRI would show whether he has Diffuse Axonal injury.   You speak about EEG’s but not about an MRI. They could not figure out why Cavin was not coming to consciousness. Once they saw the DAI on the MRI, it explained it.  The neurologist basically told me “with DAI, you get what you get,” and then discharged him from neurology.  At least after that diagnosis they stopped pretending that he didn’t have significant damage and stopped trying to “wake him up.”

I scrambled to find out everything I could about this type of injury. What I discovered was that there is a stretching of the dendrites that connect the neurons and a subsequent “calcium cascade” that destroys the axons associated with those neurons.  

I have since learned about neuroplasticity… that even if some neural pathways have been damaged, there are new ones that can be developed. The key here is that “neurons that fire together wire together.” This is through consistent repetition, in a minimally stimulating environment.

But, back to where you are now…

I talked to him constantly, I told him over and over what had happened and where he was and that I was going to be there throughout to “walk him through this” and that he would “come out the other side.” I sang songs that I had taught him through childhood, and talked to him as though he were conscious. It is said that comatose patients do hear you. I told him about the day he was born, I told him stories of his childhood etc.. It takes whatever it takes for the brain to heal.

I know what you are going through, because even though it appeared that Cavin woke up, at that point, he really didn’t. He has no memory of the six weeks  he spent at Elmhurst Hospital until a few days before he was moved to Mt. Sinai.

What I have learned is that the brain is the slowest organ in the body to heal. It takes however much time it takes and it is a roller coaster. But, conceptualizing that fact and hunkering down for the long haul makes it much less anxiety ridden. There are so many “sub processes going on” during this period that, in retrospect, I realize are necessary and vital: the improvements we see as “small” are actually huge milestones, considering the insult the brain has suffered.  

Your son sounds a lot like mine – a dearly loved, wonderful spirit. I never judged why this happened to Cavin. I felt as though it was a part of his soul’s path (and ultimately also my soul’s path). I did not and still don’t know where it all leads but it is a worthy one.   

You and your husband have my greatest compassion and respect for what you are going through.

Kindest regards,

-Kris