Sunday, September 20, 2009

Update from ER

Tonight's broadcast is coming to you from the ER of All Children's Hospital. So, we are going to take a "the facts, just the facts approach."

So, Wednesday went off fine, except for the fact that her counts were kind of wonky. Everything was falsely high, and seemed out of whack. Got chemo, came home, all was fine.

Thursday I get a call from Mandy's teacher that a little girl in her class went home with what was presumed to be the flu. So, Friday morning I called clinic and said she had an exposure, as the plan had been to put any of the immune suppressed kids on Tamiflu if they had a direct exposure.

We get to clinic and she is running a low grade fever. Upon further examination of a sore she had been sporting on her lip for several days it is believed she had/has a herpes infection. Came home with anti-viral. Fever stayed low grade through Saturday afternoon, but she felt fine.

Sunday, she woke feeling fine, acting fine, still no temp. She was in her room and came out with zero color at all and said her head at a 9 on a scale of 1-10. She NEVER complains, so that was a huge statement for her to make. She was also complaining of tummy upset.

She laid on my lap while I paged the oncologist. While she was snuggled into my lap she jerked her head 4-8 times or so in rapid fire form to the right and then threw up.

Her speech was slurred, she was off balance and said her vision was blurry.

The oncologist called back and said to come in. She was very lethargic in the car and sleeping off and on. She threw up one more time on the way to the ER, about an hour away.

By the time we got here, she was stating to improve and her color was coming back a bit. By a few hours later, she seems close to 100%. She is now asking if we can order pizza. This is all scarily similar to "episodes" that happened seemingly endlessly back in 2005 that we never got a diagnosis for.

They did a CT in the ER that showed no acute changes.

I have been given the choice to take her home and follow up in the AM for EEG and possible MRI(but she has an MRI scheduled in a little over a week.) I have spoken to her neurologist who was treating her back in '05 with the episodes no one could figure out. I wrote about those here before click here to read that post.

He said to call at 9am at the office and he will try to get an EEG right away. MRI....we will have to see. If there was anything hugely significant hydrocephalus, significant growth, etc. it would likely be seen on the CT. With an MRI pending in a little over a week, they may just let that one stand.

So, we are sitting in the ER and trying to decide if we should stay here or go home and follow up tomorrow. The good news is she seems to be feeling fine. Counts are good, white count is 6.0, which is normal for the non-chemo population but oddly high for her. It was 2.36 on Friday. That could be from the herpes infection, or possibly even the antiviral, I believe. A white count can be falsely elevated following a seizure too, I am told by the ER doc.

So, I am going to sit on it for another hour or so and then re-asses where she is and see if we are better going home or better staying here. If she has another episode, I would like it to be here, where they can see, assess, medicate if needed. But, I don't want to hang out in an ER just for the heck of it. They don't have a room on the floor, so we would likely be in the ER for the night. Not helpful for her getting some rest.

Ronnie is leaving for Canada in the AM... Kids and dogs have already been dropped off with wonderful people who will watch out for them.

So, there ya go. Will update more later.

Love to all~


April Anderson said...

Praying for Mandy that you get some answers to why she is having these symptoms!

Toni said...

Natalie, I am praying that things will pick up and someone will have some answers for you soon. I'm sending positive thoughts and prayers your way. Give Mandy my love, I am so looking forward to see you guys in December. Love Angel Toni

Jacob McLeod-Steinmetz said...

Dear Mandy and family
I found your link on the cancer crusade ..
I just wanted to sending you positive healing energy and prayers
keep fighting sweetheart you can beat the NB monster
with Love Jacob's mum
"Leukaemia Sux!"