Thursday, December 19, 2013

The Indomitable Spirit of Maximilian Watson

Why?

WHY?!

Let me tell you "Why?" with two stories then likely a bit a huffing and puffing and rambling (if you know me).

Max had a rough go in his first year of life. You can anticipate life might have thrown some challenges your way when you start out by having 250 seizures A DAY then have two brain surgeries at FOUR MONTHS OLD.

Throw in a '200-300 people in the world, exceptionally rare, genetic metabolic condition' and you probably start to wonder who dealt your hand.

When Max's seizures and metabolic condition was diagnosed, all of the odds were against him. The seizure activity level placed his brain at tremendous risk. No seizure med they tried worked and brains don't do well with uncontrolled electrical activity (seizures) for prolonged periods of time.

PLUS...the levels of dangerous chemicals in his body as a result of the metabolic condition were at lethal levels. Literally. He should have been dead when they found the seizure and metabolic genetic disorder at four months old.

In between trying to get seizures under control - hence the two brain surgeries - and metabolic byproduct chemicals under control, they examined every body system on Max because most of them should have been damaged by the dangerous chemicals.

But they weren't.

And no one could explain why.

42 days in the pediatric intensive care unit (PICU) before he was 6 months old. Two brain surgeries. A metabolic genetic condition that only 200-300 other people in the world had.

Tiny four month old Max in an ICU bed.
Yet this kid was a fighter.

His body and soul willed to live despite everything trying to kill him.

I remember one late night in the PICU when Max and I were there alone. His face and head were swollen from the brain surgeries. He was in a medically induced coma to stop the seizures and allow his brain to heal.

Max, 4 months. Out of a coma, post brain surgery.
I laid my head on the pillow beside him and vowed to him that if he would fight with everything in him, I would fight with everything I had.

He pulled through against all odds, against all expectations of the medical teams that he would survive this first hospitalization.

Max and me. Max, 4 months old. Post brain surgery in the ICU.
And one week after we were all home the biggest fight of all of our lives, I packed up my car and moved to California.

Why?

Because fighting for him meant me moving by myself to California to keep my job so I could keep insurance for Max.

This was our first glimpse of the financial realities we would face in caring for Max.

(A different story to tell for a different time but months later I was back home in Denver after we realized we couldn't find care for Max in other places.)

My second story...I'm full of stories. :-)

In October of THIS SAME YEAR, Max turned one year old. He fell terribly ill very quickly. Double pneumonia. Breathing machine (ventilator) because he could not breathe on his own. Thirty plus days in the PICU again fighting for his life.

This is where I frequently say, "they never tell you this in the baby classes when you find out your are pregnant."

As Max struggled for life in this PICU visit (we have many PICU stories by the way...), he would make small strides then step backward. They would try to wean him off of the ventilator (the breathing machine). As soon as he would get off of the vent, his O2 and CO2 levels would get out of sync and he would need to be reconnected to the vent. This "attempt then fail to get off the vent" happened FOUR TIMES that month.

We were faced with the reality that Max may need a ventilator long term to breathe for him. It was a terribly daunting realization that he would need a tracheotomy.

Why you ask?

Because of the message from the respiratory team acquainting us with the trach and portable ventilators.

What did they say that was so 'terribly daunting'?

During the process of describing this new reality to us, they said "after surgery, Max will be in recovery, then the PICU until he is stable. After he is stable, he will go to a normal hospital room and stay there for a year to a year and a half (1-1.5 years) until we can get a portable ventilator for him for home."

"I beg your pardon. I thought you said 1 to 1.5 years?"

"Yes"

"Why?"

"Your insurance doesn't cover portable ventilators and they cost  $100-150,000. For most families, it takes about 1 to 1.5 years to line up funds for a vent."

We were gutted. We had lived most of Max's first year in the hospital then apart and were now faced with the reality of another 1 to 1.5 years in the hospital.

We'll call this reality number two (in this post anyway) of the financial implications of a child like Max.

Most doctors didn't expect Max to survive the first hospitalization...but he did.

Some doctors didn't expect Max to survive this second hospitalization...but we did.

A doctor who was consulting on Max's case regarding the tracheotomy came to see Deana. He suggested to her that perhaps we should execute a DNR (do not resuscitate) on Max. That poor doctor didn't know who he was talking to. She told him in no uncertain terms to leave the room and that he wouldn't be working on Max even though he was the head of the department.

Max, 6 months old. Two months after brain surgery.
Within the next day or so, we had a care conference in a big board room. A care conference is a meeting where all of the doctors come together with the family to discuss the medical status and plans. It was a mix of doctors who knew Max. They had seen him survive and thrive through his first hospitalization. They knew him as an overcomer.

And other doctors didn't know Max. They saw a very sick little boy who had failed to get off the vent four times. And some very focused parents who they didn't quite understand.

Partway through the meeting, one of the new doctors asked Max's mother and I what our expectations are for Max. They were trying to feel out the DNR and understand why we had such a visceral reaction to it.

"What are your expectations for Max?"

I let the question hang in the air for a moment before I responded.

"We expect Max will run marathons" I responded.

You could feel the tension in the room rise as the doctors who did not know us thought 'these poor stupid people who don't realize their medically fragile, wheelchair bound son isn't going to run marathons'.

I read their minds as they sat there thinking their negative thoughts.

I said again..."We expect Max will run marathons."

Pause.

"Will Max run marathons?" I asked anecdotally.

"We don't know" I continued. "People rise or fall to the expectations that we set for them. So if we expect Max will run marathons, the sky is the limit for him but if we expect he will not make it out of this PICU that will be his fate."

The doctors who knew us sat beaming, arms crossed, knowing of our sons superhuman strength.

The doctors who did not know us sat slack-jawed, confounded, unsure what to say next...so I continued.

"But any doctor or medical professional in this hospital who doesn't think my son can run marathons or rise above our expectations for him will not touch our son again. They are not allowed to work on him if they don't think he will be better after touching him."

I don't remember much of the rest of the meeting. I think I probably derailed the agenda. I have a way of doing that.

What I do know is that in the following days, my son expressed again his warrior will to live and escaped a tracheotomy by a few hours because he said 'No, I want to live.' (another good story for another day)

So back to the original question - why?

Why are you asking for money for Max? Don't you know there are others who are in greater or different need?

It goes back to that time almost 10 years ago in a dark ICU in the middle of the night.

When I told a little boy who had every reason in the world to not live, that if he would fight...if he would live, we would do everything in our power to fight for him.

So when other children and families struggle and scrape and wonder how they will get by, we fight.

When other families give up and let their children lay in beds or on the floor because they can't move them any longer, we fight and pick him up even though he is too heavy.

When other medical situations would consider that maybe the patient needs to be in a hospital or assisted living situation, we fight and find a way to keep him healthy, happy and at home.

Because as long as he is breathing and fighting and striving and defying every odd that is placed before him, we will try to keep up with his warrior spirit.

That is why we fearlessly ask, would you help us give Max everything he needs so he can continue to change the world...one of us at a time.



Photos and story © 2004, 2013 Steven and Deana Watson. All rights reserved.

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Max, 9 months old.
Maximilian Martin Watson is the first known patient with Cobalamin X, a disorder with only 15 known patients in the world. The condition was found in Max because he survived every attempt of his body to try and shutdown.

He is profoundly disabled from birth, reliant on his family for  full care including transfers, feeding, medicines, and all his needs.

He displays relentless thirst for knowledge in school, a clever humor, compassion for those he comes in contact with, and a defiant warrior spirit that insists on living and thriving when others may have already quit.

He is so healthy that doctors now refuse to guess how long he will live. He is the oldest known patient with a brand new genetic disease (announced in October 2013) so it's anyones guess how long this mighty warrior will live.

Would you consider supporting this fundraiser for modifications in his home?


Max, age 10. 5' tall and 90 lbs now.



Aside: Max was originally diagnosed with a different genetic disorder at 4 months old but through persistent research by his doctors they identified this brand new disease.

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