Unraveled

Thanks to everyone for the thoughtful inquiries regarding MC's EEG. I once wrote in India that I only write on the good days. And I meant it.

This past week, everything unraveled.

Mind you that even on our best days we operate in a half wound tangled sort of fashion, usually on a level that keeps us in constant contention for World's Messiest Family... but nevertheless, we function.

Which is why when MC's EEG two weeks ago was cancelled, we were still functioning. 

Yes, cancelled. After 4 beautiful seizure free weeks, MC did exactly what one who knows MC would expect him to do. He waited until we had him dressed and ready to go for his appointment (not a small feat for a child with an extreme sensitivity to be being clothed in anything more than a summer tank who is about to be taken outside for only the second time in his life in the dead of winter) before spiking a 102 degree temperature and graduating into a seizure cycle.

I, of course, responded in the only way I know how which is to get one more cup of coffee, call our Super Fabulous Nanny to let her know I'd be spending the night at MC's house, and begin my usual routine of making 1001 phone calls... still functioning in the usual tangled mess mode but reminding myself of the following:

Whenever coincidences present themselves, you can dismiss them as meaningless or choose to recognize their amazing potential. In reality, life’s coincidences aren’t random occurrences in a chaotic universe – they are clues to fulfilling your deepest dreams and desires.~Deepak Chopra

Not surprisingly, less than 48 hours later, we were "coincidentally" connected with a new neurologist at a new hospital who had a real interest in taking a fresh look at MC. I think we were All hopeful that he could fulfill our deepest dreams and desires for MC.

I prepared MC once again for Outside and waited for the ambulance to take us to the new hospital. It was our first ride of the year, inner city style with Young Jeezy blasting the entire way. I rode with him in case any emergency seizure meds needed to be administered which they awesomely did not.

When we arrived at the PICU to a comfortable corner dimly lit suite (just the way MC likes it) it was a reminder that this guy has got friends in high places. But when his Reikhi Master who usually visits the kids at his House on Thursdays surprised us at the hospital so that he wouldn't miss his session, it was a reminder that the kid is just down right spoiled (and rightfully so).

Cementing my status as a Stay at Hospital Mom, I got busy oohing and ahhing over the variety of suction catheter extensions this hospital stocks. Sincerely hoping they'll make me a to go bag.

MC finally had a 24 EEG, and it showed the same old ugly hypsarrhythmia pattern. I'd say this is probably about the point at which things started to unravel.

We were headed into the weekend which meant that our nanny was making calls to her nannys to coordinate care for the Princess. Carlos filled in when necessary.

Duane was bunking in at the PICU because I got sick. Super Fabulous Nanny got sick. And Carlos and the Princess conspiratorially appeared to possibly be sick (perhaps only from attentionitis).

Oh hey, Mom! I thought nobody was looking.

Another hospital family meeting was arranged to discuss our options for MC. Thinking we are in the running for the Guinness Book of World Records for family that has attended the most hospital family meetings to discuss the lack of available treatments for their neurologically impaired son.


We were told there are 3 viable options to attempt to treat MC.

1. ACTH- most dramatic response, if any at all, it could improve MC's neurological state to that of a young baby, but it carries a very high risk of death for MC
2. Vigabitrin- less dramatic response, if any at all, with a significant risk of peripheral vision loss
3. Ketogenic Diet- less dramatic response, if any at all, with a risk of hypoglycemia and correlating seizures

Whoever said that the only thing certain in life is death clearly never had a medically complex child. 

Because while each meeting starts out differently, the conversation inevitably turns to the uncertainty of death. For our baby.  What if the medicine causes him to die? What if an infection causes him to die because we put him on the medicine? What if he declines in this hospital? In a different hospital? At hospice? While we're getting coffee downstairs? While we're at home? What type of interventions do we want or do we not want?

What DO we want to do in all these uncertain situations? Because we need to be certain before they happen so that his doctors can be certain about what We would want them to do. 

And while it's hard enough to make such decisions on your own, imagine trying to come to One decision between Two people. Can you picture the unraveling?

We ultimately decided that the Ketogenic Diet was the best option for MC. The risks involved-- hypoglycemia and seizures-- were relatively mild compared to the others.

We started the diet last night, and this morning around 6 a.m., MC developed hypoglycemia and seizures. 

We are slowly winding back up, today...