Thursday, January 31, 2013

Room 2 Update

We're still here. The hospital, that is.

I wouldn't hesitate to say that the past 2 weeks have been the most challenging of the past 10 months (and trust me, that's some tough competition). 

Shortly after making our big decision, we did what we do best. (Actually, MC did what he does best which prompted us to do what we do best.)

MC pulled the unexpected and we changed our minds.

Prior to making our decision, we had recently started weaning two of his seizure medicines (Keppra and Pheno for our OS fans) which allowed his new doctor to see what he's like in a more natural state (i.e. not knocked out on enough sedatives to topple a 500 lb man).

I was the first to get a glimpse of the wild and free MC, and sadly, it was not pretty.

He was violently seizing in a pattern I knew to be indicative of  infantile spasms which prompted me to do what any good SNandMCK mom would do-- grab my camera and begin recording.

His doctor was able to confirm the movements which meant that MC was now displaying the typical seizures that would correlate with his EEG pattern.

In sum, the benefits of using the riski-er drugs rose, and we decided that in addition to the Ketogenic Diet, we would start MC on Vigabatrin as well. After several days of withdrawal seizing, we now wait to see what effects the new therapies might have.

And while I'm hesitant to put it out there, there's a possibility that the waiting could take place at MC's Home as early as next week. 

Which would be fantastic. As this hospital livin' stuff with a homebound ten month old is far more challenging than it was previously with a hospital toting luggage-like infant.

Particularly, for a dog named Carlos.

Thursday, January 24, 2013


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...

Monday, January 14, 2013

A New Label

Today, at 2:00, MC will have his fifth EEG to determine what effect the vitamin b6 has had on his brain.

An EEG that will, apparently, tell us if he has transitioned to "normal." 

Nice, right? A machine is going to tell me if my SNandMCK is "normal." (I found the internet acronym label on a Special Needs and Medically Complex Kids forum the other day, and I've been dying to use it in an upcoming post. Doesn't it sound fun if you say it really fast?)


I'm not even sure if I'm allowed to use the whole thing when referring to MC, or if I'm just supposed to call him a MCK, but while I've seen SNs stand alone, I've yet to see any solo MCKs. Which makes me wonder if there aren't enough MCKs in the world to have their own forum, thus the need to group them with SNs, or if in the alternative, the MCKs always have additional SNs which is what puts the "C" in MCKs in the first place. I will look it up and get back to you...

(Coincidentally, I just read this post as I was getting ready to write my own, and learned that I should not even be writing a post about "normal." Fortunately, I don't think I have nearly enough SNandMCK readers at this point that I seriously risk offending someone, but if I do, apologies in advance. No time to edit today.)

Anyways, back in August, MC had his first EEG in India. I was told that it had come back very abnormal. Emphasis on the very. At the time, I wrote that for Duane and myself, it didn't really matter what that test said. Our son would always be normal for our son.

But what I shortly realized is that it very much mattered what that test said. Not to us... but to the medical community. Without that piece of paper labeling my son as very abnormal, there's a good chance I would still be sitting in India. Or worse yet, I would have finally made it home... sans my MC.

America loves to label. And it's really important that you have a label. It's really important, particularly for already labeled SNandMCKs, as it is often dispositive of the medical care that they will receive. 

If MC's test today shows that he is still "very abnormal," or that he has maybe graduated to just plain "abnormal," then it would mean that he retains his current label of having Ohtahara Syndrome-- a seizure disorder that is estimated to affect .02 % of the epileptic population which is estimated to affect .05% of the general population. A seizure disorder characterized by intractable seizures and early death as a result of there being no seizure resolution. Not surprisingly, there is little medical community interest in this disorder.

If, however, it shows that he is "normal," then he will be labeled with a new seizure disorder called Pyridoxine Dependent Seizure Disorder with an estimated 1 in 800,000 birth incidence. A seizure disorder characterized by intractable seizures that can be resolved through vitamin therapy. Not surprisingly, there is more medical community interest in this disorder.

You follow? Rare disease with no known resolution equals abnormal. Rar-er disease with known resolution equals normal. The former equals no medical community interest. The latter equals interest.

Of course, kids who have the latter, can still have seizures when they are sick, stressed, overstimulated by their twin sister, or perhaps, venturing outside for only the second time ever in their ten months of life, in which case they would start seizing, and could mistakenly, by a machine, be labeled as "still abnormal" despite the fact that they are actually "normal."

Which means that as a Mom, I don't give a damn whether this test shows that my kid is "normal." I am well aware that our journey with MC has, and will likely always be, anything but normal. 

Instead of focusing on his label, I have always worked to get MC treated based on mine and his caretakers observations of his needs. In turn, I have given the machine's observations the weight that they deserve.

But as an Advocate for my labeled SNandMCK, I'd go so far as to say that MC's life depends on this test, as a finding of "normal" could trigger some much sought after attention from the medical community necessary to treat the recent changes that we have observed of our MC.

For this reason I hope that today brings him a new label.

Friday, January 11, 2013

Let Me Un-inspire You

Yesterday was a difficult day. Yesterday I had 2 cupcakes. And I paid for coffee.  The good kind. I wore my fuzzy gray hospital sweater. The same one I wore the day before. And I didn't make a single phone call advocating to get MC the care that he needs. After that, I didn't make a single subsequent phone call advocating to get payment for the care that he needs that I couldn't get in the first place. Not only did I not accomplish anything on my To Do list, I didn't even make one. I emailed back a cake company that had generously offered to make MC a birthday cake, and then cried because my child's eating habits consist of continuous formula flowing through a tube in his stomach. And I considered taking a nap. My ultimate don't-go-there activity. At night, I went home to sleep in my own bed. And when I called to check on MC and heard that he was having difficulty breathing, rather than go back and be with him, I told his nurse to call me if it got worse.

Yesterday, I let myself be the totally and completely un-inspiring, angry, frustrated, so very very sad Mom who had reached the end of her rope... and instead of tying a knot, I let go.

Worst of all, I couldn't get over how inappropriate the timing of this episode seemed what with MC doing so well. I mean really, compared to  the last 9 months, he is a completely different child. Sleeping and pooping and best of all breathing! My child is breathing! Why the heck wasn't I out jumping on couches a la Tom Cruise?

I realized today that perhaps it's because I am celebrating the fact that my child is sleeping and pooping and breathing. Celebrating the fact that my child is finally beginning to perform the most basic of life functions... a mere two months away from his very first birthday. Celebrating with incredible enthusiasm caused by the uncertainty of how many other milestones I'll have to celebrate.

Celebrating, as the Princess, his built in BFF, his partner in crime, his twin, "cruises" (according to Babycenter this is the correct term for her current state of mobility) around him, screaming and laughing and anxiously awaiting for him to join her.

Celebrating and grieving at the same exact time.