January 4, 2011

Mission Impossible? Or Mission I'm Possible?

Bertrand wasn't glad about all the measuring and attention to detail, but mom & dad sure were!

We arrived at the Cleveland Clinic on Sunday afternoon, had our first appointments on Monday, and last night was Bertrand's first night staying inpatient. (His room is M52-05 in the Pediatric Epilepsy monitoring unit.)

THE HOSPITAL

Before arriving at the Cleveland Clinic, we'd heard it described by friends as "medical Disneyland", so our expectations were set pretty high. The Clinic hasn't disappointed!

It is a MASSIVE, multi-block medical complex, interconnected by skyways (extensively peppered with flat screen TVs) with optional patient shuttles.

The main hospital building could double as a museum with its soaring architecture and world-class art exhibits. (I could dedicate a post to this aspect alone!)

The specialty gift shops--yes, plural--include a bookstore, spa shop, clothing boutique and typical gift shop. They are larger than your average grocery market.

Much to Matthew's delight, dining options include everything from gourmet caffeteria to McDonalds, Starbucks and Au Bon Pain to the award-winning restaurant, Table 45.

And, the four lodging establishments located on the medical campus run the gamut from Ronald McDonald House to the Intercontinental.

The prior amenities are just scratching the surface.

I'm surprised I haven't seen a waterslide--then again, I probably just haven't found it yet.

Obviously, the most attractive feature of the Cleveland Clinic--the one that has us & people from all over the world traveling here--is the world-class medical staff.


NEUROMETABOLIC / NEUROGENETIC SPECIALIST

Bertrand's first appointment of the day yesterday was with Dr. Sumit Parikh, and I'll be upfront by saying I came out of that appointment with a crush on him. ;) Heck, I think Matthew, Diane (Bertrand's nana) and even Bertrand himself came out of that appointment with a crush! It is unbelieveably rare to find such a combination of expertise, attentiveness and compassion.

To him, an expert in neurometabolic, genetic and mitochondrial disorders, while Bertrand appears to have a genetic disorder, he appears neither metabolic nor mitochondrial!

Given the early onset of B's condition, his liver function improvement, and relatively stable condition, if it were a metabolic condition Bertrand would be far worse--if not dead--by now.

As far as a mitochondrial condition goes, while we could consider a conclusive muscle biopsy, Bertrand lacks several key chemical and physical indicators (lactic acid, hypotonia, etc.).


PEDIATRIC EPILEPTOLOGIST

The following appointment was Bertrand's first ever with a REAL epileptologist, Dr. Deepak Lachhwani. Dr. L has experience with children seemingly similar to Bertrand!

Since he was a last minute substitution to Bertrand's medical team, he hadn't yet read Bertrand's medical file--this is a PLUS. I couldn't be happier that Bertrand's seizures will be viewed through a fresh set of eyes, untainted by potential metabolic, mitochondrial, genetic or other considerations, especially after our meeting with Dr. Parikh.

He will proceed as if intervention, pharmacological and/or surgical, is still an option. (Many of Bertrand's prior doctors discounted intervention right-off-the-bat on the assumption that nothing would work effectively in the case of an inborn error of cellular metabolism.)

After reviewing Bertrand's prior MRIs, he may order a new MRI or PET scan if indicated.


ELECTROENCEPHALOGRAPHY (EEG)

Bertrand had 3 EEGs in 2009, 6 EEGs over the course of 2010, and his first ever EEG done right in 2011. I'll admit to feeling simultaneously shocked, incredulous, awed and furious.

Bertrand isn't your typical kid with a febrile seizure or epilepsy. An EEG should do more than prove "yup, he had a seizure". (NO DUH. He has seizures.)

An EEG should provide information--usuable information--on where his seizures are originating, how/if they generalize, how they manifest... A potentially MAJOR puzzle piece.

This seems obvious, right?

Wrong.

At other locations, which shall remain nameless, they just slap leads on haphazardly without measurement, never check if equipment is working, there is never a nurse response, video isn't adjusted, techs aren't monitoring the child remotely, conductive gel isn't reapplied, results take weeks... I could go on and on but I get enraged thinking about it!

At noon today, an entire team of doctors will come in to speak to us personally while Bertrand is still inpatient to discuss his EEG--which they have already read!

(Anyone who knows me can probably visualize how this makes me want to tear my hair out, bash my head against a wall AND hug someone all at the same time. I'm not dramatic at all.)


NEW YEAR'S RESOLUTION GONE BUST

I happen to LOVE making new year's resolutions. Every year I make just one resolution and I keep it. This year, my resolution was "no expectations".

I spent most of 2010 horribly disheartened by shattered hopes--disappointing ketogenic diet results, ACTH, hospitalizations, broken bones, zonegran, miscarriage, etc. 2010 was not a bad year, but having to pick myself up repeatedly after each instance was HARD.

So, by "no expectations" I meant that I would continue to do my best without emcumbering myself with a set expectation or any false hope. Unfortunately, I may have made a resolution I can't keep.

Apparently, I am hardwired for hope. Subconciously I grasp onto any shred of possibility and I make camp in crevises of ambiguity. The past 24-hours at Cleveland, I did more than make camp--I built a castle.

Doctors haven't even read Bertrand's EEG and in my dreams I was seeing Bertrand with some seizure control, taking him off of keto, weaning his zonegran AND keppra, & feeding him finger foods in his high chair. I woke up wanting to scream at my trecherous dreams!

I can say "no expectations" all I want, and spout off about the importance of quality of life all I want--my subconcious knows the truth. In the face of the impossible, I'm still trying to "fix" my baby.

I guess that makes me a mom.

14 comments :

  1. I'm glad Bertrand is getting the attention he deserves, and I pray you best wishes come true.

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  2. Sounds like an awesome place! (I bet there is a water slide somewhere!)

    I really hope you get some answers. Those doctors sound competent, knowledgeable and amazing!

    Good luck and remember to take care of yourself too!

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  3. For sure you are good at getting my ire up! NINE useless EEGs! Sorry. I am emphasizing the wrong stuff.

    I am imagining spires topped with sparkly banners with you.

    Thank you so much for sharing this, Cristina. I believe Bertrand's story is helping others, many in far off lands. Barbara

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  4. You have my eyes stinging with tears right now. Never give up hope Cristina. Love to you and your family!

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  5. A mother yes, a very good mother that loves her child, and wants the best for him!

    Good luck Bertrand&family!

    Marghy

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  6. Hooray for the Cleveland Clinic! I am rejoicing with you. Please revisit my post entitled "Cleveland Clinic: How do I love thee? Let me count the ways."
    http://woolleymammothreunion.blogspot.com/2010/10/cleveland-clinic-how-do-i-love-thee-let.html. LJ had an EEG here at Stanford a few weeks ago and it was ridiculous compared to CC. I had to page an EEG tech halfway through because I could see one of the leads on the top of his head was completely off. Who knows what was going on with the ones under the gauze.

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  7. Sounds so awesome. Medical Vegas came to my mind. I'm excited for new, untainted ideas!

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  8. Maria cmh134@hotmail.comJanuary 4, 2011 at 10:42 AM

    Hello... my daughter has epilepsy and I found this blog on a search for 'ketovolve'... did you ever feed this to your son? Would you mind sharing your experience if so? I've only read a little of your family's journey; OH MY! We can relate, similarly, though of course not the same. If you prefer not to be bothered, i totally understand and wish you all a healthy New Year.

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  9. Hi! I'm your friend Ashley's sister. I spent some time with Ashley and John Scott at the Cleveland Clinic after his surgery. SO glad you are there. It is awesome, isn't it? I hope they are able to help out Bertrand!

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  10. The Clinic is great as my sister has spent many days there over the last 30 years.....how it's changed but the medical expertise has always been great. I am thinking about you and wish you the best year ever. Read your blog almost every day and think you guys are awesome parents and writers too.........janet callahan
    p.s. hope to see you at the lake this June.

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  11. Weeping and cheering right along over here! (I'm glad you described what a good EEG looks like because you had me worried!) Wishing wonderful things for little B!

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  12. Mi querida Cristinita: Sabes que eres la Mama ejemplar! Que Dios te bendiga! Tu Titi Lili

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  13. Thank you all from the bottom of our hearts! The journey continues to be challenging but we feel fortunate to be on it. :) And we feel particularly fortunate for our supportive family and friends such as you all!

    Much love,
    Cristina, Matthew and Bertrand :)

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