Conflicts of the Heart

There's a part of me that I left back in Boston. That part of me is trembling today as I see the tragic reports from the city that I briefly called home. Had I a life to relive, I would make it my hometown. 

At the age of 14, my son's care has become guesswork. The first time I felt conflicted on his care was when we lived in Boston and were trying to decide if he should have surgery on his ever tightening leg muscles. Now, I face trying to decide if Chris should start the Ketogenic diet or not. And it's become a huge decision, and not everyone is on-board. 

What would you do for a 30% chance of successfully minimizing your child's seizures?

Is 30% good or bad odds? 

The administration where my son lives is not on-board for what it takes for him to begin the diet. But success is established, or should I say failure is established, at three months after beginning the diet. If it doesn't work after 3 months, the diet is abandoned. 

How does a 30% chance of success that is verified after 3 months sound? The facility where my son lives has to take on a the responsibility of testing Chris' blood glucose levels daily after a one week stay in the hospital. They need to test his urine ketone level daily, too. They also have to mix the keto formula correctly and accurately every day. They need to be on-board.

The facility must notice if my son goes into a state of acidosis or a state of hypoglycemic shock. They need to notice and respond appropriately. Will they do this? Will my son be safe? 

Suddenly, 3 months sounds daunting for a treatment that probably won't work. 30% chance of success vs 70% chance of failure. 1 in 3 odds doesn't sound too good, but we'll know in 3 months if it works.

I asked the supervisor of the facility today what she will think if the diet fails after 3 months of trying it out. She was silent for a minute before saying, "I'd think, Damn Kelly!"

I guess I can live with that! Damn, Kelly! So what else is new...

Finding Hope

Today my son Christopher was evaluated for the Ketogenic Diet, and we are going to proceed. Being solely g-tube fed, this process should be a no brainer because Christopher will not object to the diet full of fat and void of sugar. But it is not. The pediatric nursing facility he lives in has to be consulted and trained. Authorizations from different insurances need to be secured. Plans need to be made for the necessary hospital stay to begin the diet. Blood tests must look good.

It was a question the pediatric neurologist asked that is haunting me... "If Christopher has a slight improvement in his cognitive ability, how will we recognize it?" he asked.

Dare I hope that aside from a cessation or lessening of seizures there might be some improvement in his cognitive abilities? Dare I hope? And what if there is? Will his life be more enjoyable or more ugly?

90 percent of everything I've tried to do with Christopher really didn't matter. All of the genetic testing to try and find a diagnosis failed and did not matter. All of the physical and occupational therapy did not matter. Same with speech therapy, assistive technology, AFOs, Botox injections, muscle biopsy, and even a conjunctival biopsy. Aside from seizure control medicine, very little has mattered. Putting out the occasional fire of an emergency medical situation accounts for a few percent.

Putting in the g-tube ended up being a very good improvement in Christopher's life, but not much else.

Will all the effort to start the Keto diet and maintain if for the few months to see if it works be worth it? Dare I hope?

And I know I will spend week after week looking deep for a subtle change in my son. A nuance. A feeling that there is something different about him.

As I was leaving the doctor's office today, the nurse practitioner said something both wonderful and alarming... "Our families that are very positive about starting the keto diet tend to be the families that find success with it," she said. Dare I hope? Dare I be so positive that it matters to a 14-year-old boy who is completely formula fed that the keto diet makes a difference in his brain chemistry? Yes, I do. I always do, and maybe, just maybe, it will happen.

And, of course, I have to wonder about the families that were not so positive and found no success with the diet... why? Did they give in to their children wanting a cheeseburger or an ice cream cone? Did they not hope enough? That's just crazy, right?

Getting My Geek On

Ever wonder what can happen when you give a big dreamer a really obscene amount of money? Here's the best example I can think of: Bioshpere 2. I put the wiki link here instead of the University of Arizona's (Current owner of Biosphere 2) link because the U of A doesn't like to talk about how the Biosphere 2 was dreamed up as how to make an earth-like environment on Mars. But that's what it is!

This past weekend, I visited the Biosphere 2 just outside of Tuscon, AZ because I have wanted to see it for years. It is a remarkable feat of engineering, but the other science going on is pretty limited. I asked the tour guide why one Univ of Arizona project was being conducted there, and he openly told me because it was far easier to get grants for research when you add that the project will be seen by many visitors on the Biosphere 2 tour.

Is Biosphere 2 a failed dream or hope to people like me who have a son who needs someone to dream up a world where he can live as comfortably as possible? It is, most definitely, both.

Most of Biosphere 2 is inaccessible by wheelchair, and I could not have taken my son on this tour. It took having my son live in a residential facility for me to even think about taking the time to go visit the Biosphere 2.  And I did it! My bucket list is small, and this is the one place I most wanted to visit right now. I am as excited right now as I was driving to go see it.

Biosphere 2 is a symbol to me of trying to make dreams come true, and maybe dreaming big and even failing big is alright. It's better than alright. It brings out the best in us.

My favorite parts of seeing Biosphere 2:

1. The ocean zone is still alive even though the coral reef died off early in the project, and some fish descended from the original stock are thriving.

2. The rain forest is really neat even though there are no animals in it. On the tour, we were told birds flew into glass and died, and monkeys were victims of the structure's fan and electrical system (one was electrocuted).

3. The lungs... two domed buildings with rubber ceilings allowing for air to expand and contract that allowed the Bioshpere 2 to be completely sealed. This was really neat, and they had one lung artificially expanded with fans for the tour. Without the ability to house the expanding and contracting air due to heat fluctuations, life would not be possible in the Biosphere 2.

The Hard Truth

Chris is doing alright. With increased anti-seizure meds and emergency Diastat (Diazepam rectal gel), Chris is back at the facility and currently on vacation from school. I tried to make sure he had a gentle Christmas holiday bringing him home for a few days of R and R, and he seemed to enjoy this time. He laughed and smiled a great deal when he was home. He also cried and screamed, and his life is filled with both extremes almost constantly.

Family members viewed Chris' hospitalization as par for the course. Maybe it's because he has been hospitalized so many times as almost a routine or maybe it's because many view his living in a nursing facility just like living in a hospital, and the facility definitely feels like a hospital setting. For whatever reason, Chris being in the hospital is not like my other children being in the hospital. It's a matter of maintenance... seizures grow worse and meds get changed. Even I went back to work as my appointments fell behind and my presence seemed useless since he was asleep most of the time and was well-watched. It was a waiting game to see if the increased meds would keep his seizures at bay, and they did.

The first night I brought Chris home, it occurred to me that he really needs the all night supervision the facility can offer. His care is truly getting beyond my capabilities. But when he was home with me, several times he would start crying and I would sit on the floor and pull him into my lap. At 14, he's still comforted by being held in my lap and falls asleep. And it still fills me with joy that I can comfort him. He'll never get any better and will continue to get worse. His doctors have explained what is expected as far as his seizure disorder, and they have explained how an EEG shows abnormal brainwaves every ten seconds regardless of if he's awake or asleep.

I can't hold him as often as I used to. But when I do have him home with me, the time is set aside just for him to be held, to be entertained, to be loved as best I can. It's only because he's not with me all the time that I have the stamina and desire to care for him this way while he's home.

Chris has been in the hospital for two days. He is not ill but is suffering from seizures that have gotten worse probably due to him growing older. We have known for some time that he has frequent abnormal brainwave activity as well as full blown seizures semi regularly. To see it all explode on an EEG monitor is disheartening and excruciatingly sad.

Choices are hard. Seizures kill brain cells. Phenobarital kills braincells but stops seizures for my son. Do we worry about sleepiness side effects from drugs when my son is profoundly mentally retarded along with being non-mobile, non-verbal, and just wanting to roll around on the floor in front of the TV with Nick Jr on?

Do I stop the nurses from waking him up to change his diaper? They couldn't diaper him well if their lives depended on it and regularly have to change his gown and bedding, but they don't want my suggestions.

How long do I allow my son to be treated like he's ill with constant vital signs being taken and doctors in training poking him?

My son's not sick. They can't stop or change his brainwaves though they can raise the threshold of his seizures with more medicine. I guess I'm thankful for that.

But soon they will release him and he will be exactly as he is right now. There is no new knowledge to gain for Chris now. I wonder why I don't put him in his wheelchair and leave... take him home and cozy up to him so we can both sleep. But I don't. I scrutinize the doctors and bitch at the nurses. I comfort my son as best I can without being able to hold him or have his iv lines removed. Tomorrow or the next day they will be removed and he will be released unchanged from how he is right now.

So why do I do as they say? Why do I argue with them about my son's treatment? Why do I quickly disappear when a student doctor comes close to entering the room?

I am fearful of something really happening yet know nothing will. I wish I was stronger for Chris. I wish I trusted myself to know what to do.

I'm trying to stay composed as Chris sleeps, heavily sedated, in the ER. He hasn't had a status seizure in years, but today it took dose after dose of meds, and now he's asleep.

The facility he lives in should have called 911. They should have called me sooner. But the seizures looked different... a new beast to slay.

My composure is sketchy. I am feeling some guilt about not being with my son when this started, but mostly I am tragically sad. It is a thick foreboding. These were ugly ugly seizures of a type I've not seen before.

As we wait to be moved into the ICU, I'm scared. I'm so very scared of what comes next.

Life goes on...

Over the summer, a co-worker pointed out to me that I described my life with my disabled son as "impossible" too frequently. It was true. "It's an impossible situation" was my mantra. I believed it, and that was my excuse for not facing the truth of my life which was it's different, challenging, and frequently sad to the point of agonizing to have a severely disabled child. But it's not impossible. I sought help and found it. My son living in a residential facility is turning out to be positive for both of us, and one cruel comment left on my last post stopped me from writing this until now.

I thought if life with my disabled son had no true answers, than my guilt and indecision were justified. The truth is, the one-year anniversary of my son being at the pediatric nursing facility came and went, and my son is doing well there. The truth is, I don't want the constant care of my son at home, and the guilt of having him in a facility is no longer enough to make me want him back in my home full-time.

The truth is, I don't need to justify my actions to anyone. Most importantly, I don't need to justify it to myself any longer. The life I chose for me and for my son is working for both of us. 

My son and I had a great weekend. The time I spend with my son on weekends is devoted to him, and I am not too tired or overwhelmed to be my best with him. It's not perfect, but it's not impossible. In fact, it is very possible for my life and for our situation. 

Thank you to those who emailed thoughtful and heartfelt messages. Your messages made me smile.

In the film Shadowlands, C.S. Lewis' character says, "I pray because I can't help myself. I pray because I'm helpless. I pray because the need flows out me all the time, waking and sleeping. It doesn't change God, it changes me."

I pray, too. And I write. I cannot help but write, and they both change me.