Tuesday, April 27, 2010

The Kid Hospital, Part I


Mother/Daughter haircuts.


First surgery over. Electrodes implanted.
I sketched Lis while she slept.

So hard.
So brave.
They let us paint Lisbeth's window with her favorite characters...

It was at just this time of year 18 years ago that we were readying for a long stay at Boston Children's Hospital, aka the kid hospital (Lis-ism). Lisbeth was scheduled for the final phase of testing to see if she would be a candidate for brain surgery. The first phases of testing had happened over the previous 2 years, including an earlier stay at the hospital for long term (non-invasive) monitoring. The neurology team discovered that Lis had a seizure focus in her left temporal lobe and we had high hopes that this lesion could be removed, and that Lis would finally be seizure free. This last phase of testing is called Invasive Monitoring - an EEG where the electrodes are surgically implanted on the surface or within the depths of the brain. I knew that Lisbeth would have to have her head shaved, so we had her hair cut short in preparation. I got mine cut short, too, in support of Lis. These pictures are from the beginning of our stay - we were there for 3 weeks. Lisbeth was confined to her bed the entire time because she was hooked up to monitors and being videotaped. Fortunately we have kind and generous relatives in Boston who let my husband Garry and I stay at their house during this time. We did the stay in shifts so that Lis was never alone. One night one of us would be on, sleeping on a cot in her room, while the other would be off, sleeping at our relatives' place. What a life saver this was, to be able to walk out of that hospital into the fresh air and sunshine of early May, and to walk the mile back to my cousin's house, where normal family life was happening. It helped us to put our skin back on every 24 hours. Children's Hospital is an intense place.
More pics tomorrow...

10 comments:

  1. I just can't imagine. She wasn't the only brave one!! ~karen

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  2. She is so beautiful, and so fragile, and so strong. I am amazed to witness a bit of the fierce battles waged by and for Lis, battles waged with love and determination and hope (and fear and doubt, too, I imagine, but with hope standing tall). Again I say how lucky you all are to have one another.

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  3. We remember it like it was yesterday.

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  4. Thankyou, Andrea!

    Yes, we are so very lucky to have each other!

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  5. Hi Kathy, my kind and generous cousin!!!

    Staying at your home is what kept us sane throughout this ordeal!!! They would have had to totally sedate me if I had to stay in there 24/7. I would have been useless!!! love you XOXOX

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  6. Hi Martha, you are Awsome Parents, life is beautiful and tuff sometimes, but you did great, I wish I could have my mom and hug her, but I send you a hug instead. Xoxo

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  7. Hi Ellie!

    Thankyou, Sweetheart. I HUG you back. xox

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