July 11, 2012

Thor vs. Children's Hospital

As promised, I'm finally sitting down to write about Thor's experience at BC Children's Hospital last week.

It was exhausting. For both of us.

After 8 hours in the car, we arrived at our hotel (thank you GPS for getting us there safely). We stayed at the Accent Inns in Richmond which is actually just a few minutes drive from Children's Hospital...incredibly convenient. Thor got comfy on the couch and settled in for some much deserved cartoons before we headed out to the iHop attached to the hotel for some pancake dinner (he sure deserved it considering all he was about to go through...)

That night I had to keep Thor awake until midnight, then wake him at 5am. The hospital wanted him severely sleep deprived for his EEG test in the morning. Considering we were up at 6am and drove 8 hours without him sleeping a wink...it's safe to say that by 9pm he was desperate for me to let him sleep. He begged me. I stayed strong and followed doctors' orders.

...we both woke up utterly exhausted.

Nurse Lisa was amazing at the EEG - so loving and kind. Thor loved her...until she started hooking up wires to his head. Then...the love was gone. He asked for some blue doctor gloves and as you can see he brought his friends Woody & Max along to keep him company...

He was calm for a few minutes after he got his gloves but then he just lost his composure. He screamed and cried, "I'm really scared!" until he finally fell asleep from exhaustion. I cried quietly for him and wished so bad that we already had his service dog to help calm him...

...but he was only allowed to sleep for a little while because they needed readings from when he was awake. He was a trooper, wore his backpack with all the wires (so he wouldn't get tangled in them) and played with me and his toys.

I had to press the button every time he had a
visible seizure so the nurse would come back in.

After 4 hours it was finally time to get those wires off! He's not excited to have to peel that darn tape off though...but he reached down his shirt like a champ and ripped the one off that was monitoring his heart.

This is a few seconds of his EEG...I thought
it was pretty interesting to see his brainwaves!

This wasn't the end of his tests though...we still had another to get through. We went back to the hotel for some much needed rest and the next morning we were off to the hospital for his MRI.

Before we even got to the hospital, Thor was
asleep. He was so tired...
Ready to go - but he says the special clothes
are "silly" and that they are like a clown :)
Several hours later we were ready to be discharged - Thor was violent and angry in recovery...disoriented and waking up in a place he's never been was way too scary. He was hitting and kicking, and screaming at the nurses and myself. It was heartbreaking. When we were finally discharged, he screamed and cried unless I was pushing him around in the stroller...the movement calmed him. (a huge thank you to Stephanie who loaned us her stroller for the trip!)

Even after all of this we still had several hours to go - waiting to see the neurologist and finally the meeting with the team of doctors. We were there from 8:30am-5:15pm that day.

Finally, my little man fell asleep and we headed off back to the hotel...

The next morning we drove the 8 hours home again. So happy to finally have that trip over with. Not as happy with the results of the testing - basically he's having seizures but because it doesn't seem to be affecting his development and he's not having drop attacks (falling to the ground) they are hesitant to prescribe medication. I understand why - he's so young that they just don't know what effects the medications will have on his development. We will continue to monitor the seizures, and we have a 24 hour EEG coming up in the next few months to monitor it more closely. Until then...we watch and wait.

As a side note, we had a pretty terrible experience at the hotel - to such an extreme that I cancelled our reservation for August which we planned on staying the night before we flew to Ohio for service dog training...I won't go into details but it was really bad. I emailed the president of the company and have been impressed with the response. Both the president of the company and the general manager of the hotel have contacted me personally and we will be staying there again in August...I look forward to telling you what a good experience we have next time...I hope.


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