Saturday, June 13, 2009

Brain Surgery

Anyone who knows Jaymi, knows that she has been having headaches for a few months.
It started off as a headache once in a while - nothing really bad. But after a while, we began to notice that she just seemed to get a lot of headaches for a 6 year old!

Last month, the headaches got worse. They were migraine-level headaches, and they usually were paired with throwing up. Sometimes they would last for days, and she would have to miss school.
We finally asked our family doctor about it, and she said it could be related to sinuses...seasonal allergies. We tried a nasal spray and it didn't do a thing. The next step was blood tests, urine tests, sinus x-ray ... everything came back fine.
The next step was a CT scan. We were referred to a neurologist to get the scan faster, hopefully. So we waited.....and waited....for a scan date.

In the meantime, Jaymi got worse. She was constantly tired and went through spurts of extreme irritability and emotional outbursts.
And there were new symptoms - most of them one-time symptoms, but all of them just a bit strange.
- a chocolate chip cookie tasted like peppermint (to her)
- crashing into things in the middle of the night
- sleepwalking through the whole house one night
- seeing double

The neurologist didn't find anything wrong, but recommended that we get a complete eye exam (even though Jaymi already had one in October and it was fine), and she said we'd hopefully get a CT Scan date soon.
So...a few days later (June 1st), I took Jaymi in for another eye exam (after another night of a migraine and throwing up) and the optometrist found that her nerves (at the back of the eye) were swollen. This meant intercranial pressure, and set off a chain of appointments that day, and doctors telling us that this was very serious. It led to a CT Scan that afternoon, which confirmed that Jaymi had a brain tumor. It was very large and she needed immediate brain surgery. We flew that night, to Vancouver, in order to be at the Vancouver Children's Hospital early the next morning.

June 2nd:
We had a very long appointment with the neurosurgeon that morning, where Jaymi was failing test left and right. She could barely walk by then, was crashing into everything, and couldn't even touch her nose with her finger. She slept through half of the appointment and just felt miserable.
She was admitted to the hospital that afternoon.

Jaymi's neurosurgeon had the MRI pushed up because Jaymi wasn't doing so well. The MRI showed a bit more detail and he told us the plan for surgery, as well as the risks involved.
The tumor was very large and was pushing her cerebellum as well as her brain stem, and there was also a lot of fluid build-up in her brain, creating pressure.

That night, Jaymi had more headaches and threw up a few times. She had been prepared for the possibility of surgery, by being cutting off of food & drink by midnight, as well as getting an IV.

June 3rd:
When the neurosurgeon visited her in the morning, he was extremely concerned that the headaches and vomiting had started again. She was dangerously close to slipping into a coma.
He had her pushed right to the top of the emergency surgery list, and suddenly, without notice, they were rushing her to the O.R. for surgery.

It was a very long wait. The estimated time for the surgery was 3-4 hours, but it ended up being 6 1/2 hours long.
Finally, the doctor came in and told us that it was over, it went very well, and she was doing fine, in the I.C.U..

So...the good news (now a week later) is that she can walk, talk, think, swallow, etc., there were no complications from surgery, she needed no blood transfusions, and the best news of all is that the tumor is benign.
The not-so-good news is that there is still a piece of the tumor left inside her brain. It was growing out of the brain stem and was too dangerous to remove. It will remain in her, and hopefully never grow again.

Also, there are some effects both from the tumor itself as well as the surgery. She has some trouble with balance and co-ordination (large motor abilities), her left side is weaker than her right, she had double vision and blurriness after surgery, her voice was very raspy, and her neck was pretty stiff and sore.

So as of today, her vision is almost all better, her voice is much better, her neck is still stiff and a bit sore but definitely improving, and her walking/large motor skills are improving every day. When she gets tired she starts tripping and bumping into things more.
Her left side is still noticeably weaker but it is definitely much better than right after surgery (or right before).
She couldn't even sit up, stand up, or walk, for 5 or 6 days after surgery.

Poor kid.....she is so frustrated too. She gets really angry sometimes, when her body doesn't co-operate with her. And this morning she was furious that her pants literally fell off of her. She lost 5 lbs. in the past 2 weeks and for a little girl who weighed 48 lbs. to begin with, that is a lot!

She has yearly M.R.I.'s to look forward to, and a bit of physiotherapy, but we are so grateful that she is alive. Thanks to many doctors and a ton of prayers, she made it through all of this.


mar said...

I'm so happy to read that Jaymi's is recovering so well!!
I still can't imagine all that you and Mark (and Jaymi and the rest of the family) went through. Again, my offer stands - if you need ANYthing, please do not hesitate to ask!

(tell Jaymi that Willow has that same outfit - the one with the seahorse!)

jhscrapmom said...

Hi flickr friend:)
I am home now, and wanted to check in on Jaymi and you guys. I, of course, cried all the way through your telling of her story. Sorry:). Again, I am so happy things turned out the way they did - awesome mommy intuition!! I wish they had listened to you sooner, but am glad everything is okay now. I am alsolaughing at J getting tired of everyone saying how strong she is;) - what a kid:)).