another Charli update

Even with our bumps...Trevy made it through surgery like a champ.

But the reality is...a hemispherectomy is extremely radical. It is...in fact...the most radical neuro surgery today.

Parents with seizing children on their knee and no other option but this radical nightmare-miracle next step are made to sign paper after paper fully detailing the risks...

Life threatening clots

Life threatening infections

Life threatening this and life threatening that...

When the brain tissue is removed it does not regenerate. Although you'd be surprised at the number of people who ask. Or maybe I'm just so deep in neurology now that it surprises me? The answer is, no. The tissue does not grow back. The area remains a cavity which fills with cerebral fluid. Sometimes the body naturally figures out how to process this extra fluid. Sometimes it doesn't. When the fluid is not processed properly it causes increased intracranial pressure (hydrocephalus) which brings with it a whole slew of other nasty effects. Seizures, vomiting, screaming in pain...and the need for another surgery to name a few.

Charli has been a roller coaster ride post hemi-surgery. And after a head CT revealed an intense build up of fluid it became clear that she would need a second surgery. Today little Charli will have a permanent shunt placed which will mechanically process the extra fluid for her.

The nursing manager told us while Trevy was in-patient...that each child has their "thing" or "bump" to get over. And once they do...the healing starts...

We're praying today that this is Charli's "thing"...


JSmith5780 said...

Sweet little Charli needs to catch a break!

MJStump said...

I don't think it was by chance that I was weeping and crying out to God when I prayed for Charli last night.

She needs a smooth path from here on out in her recovery. Her parents need it, and our online community wants it more than anything.

Praying for less bumps along the way.

Wendi Taylor said...

Thanks for doing these updates. I am praying for Charli.

Anonymous said...

Thank you for the education on what happens to the cavity post-surgery. I have often wondered, speculated. But I have felt it was an inappropriate question to ask. I guess because there are so many deeply personal issues you (and all the IS community) deal with seemingly non-stop, I try not to be insulting with layman questions. Thank you. And prayers for Charli. CB

happy's mommy said...

CB...I forget sometimes that this is my world. I don't bat an eye anymore at complicated sounding terms and such.

I will say for myself...I am ALWAYS open to questions of pure nature. ALWAYS. It is okay to be curious.

I only get annoyed with people who ask questions...and then proceed to "question" my judgment. Yeah...that's obnoxious. Making judgment calls when you know two bits of information because I educated you...and then treat me like I'm over the top because I refuse to skip Trevy's nap or whatever it might be.

I am thinking of someone. But it's not you! :) Ask away...
And I'll do my best to explain things more fully too.


Anonymous said...

Please tell Charli's family that we are thinking of them. Trevor had to get that darn shunt put in too....it was one of those pre-surgery questions of ours. We really didn't want him to have one. They said that the chances were slim, but we all know what odds mean to us hemi families:)

Anyway, please tell them that once he got the shunt placed and weaned off of phenobarb, he was a different person and the magical healing began.

Maybe you can send me an email address privately and I'll reach out to them?

Hugs to you and your beautiful Trevy:)


Anonymous said...

Keeping you all in our prayers.

With all you have learned, are learning and will continue to learn, you are making sure your beautiful son has the BEST opportunties for the future.

I know what it is like and have walked a journey similar.

Just let your love surround him..it is the greatest gift of all. Not to mention asking everyone at BCH questions, making new connections, perhaps to help someone else..

Sending blessings always. :)