Saturday, August 02, 2014


The city I live in is celebrating its "days"...  there's a perfect view of the firework show from my front yard.  Right now I'm watching families gather at the park across the street,  neighbors enjoying the company of their friends with bbq and loud music, and the neighborhood out and about generally having a good time.

Typically we have a bbq with friends and family at our house and watch the fireworks afterward.  This year, I'm sitting in the driveway with just my two kids, throwing Snap-Its, and trying not to feel sorry for myself.  My own parents are away, my in-laws are unable to come up, my siblings either live far away or weren't invited because I've been to preoccupied with what's been going on with London to throw together a bbq, our friends are really Thomas's friends, and my husband is over seven thousand miles away.

I feel terribly alone.

I invited one if my best friends and her family over, then plans changed due to naughty kids and seizures. It seems like nothing is going my way, and I'm wallowing.

I feel like things are happening for everyone around me that I've been wishing would happen for us for some time now; and my optimism is steadily diminishing.

 Hopefully London will rest tonight and I'll feel renewed tomorrow...

Friday, August 01, 2014

Hospital Stay

Things have been crazy lately. We thought London got a sinus infection a few months ago, but after 30 days of antibiotics, things with her seizures just weren't going back to normal. She was prescribed clonazapam to give at night as a little extra boost of seizure meds as well as a bit of sedative to help her sleep.... it worked wonders for getting her through the night with no seizures, but during the day she was having a different kind than her normal and they were causing her to vomit almost each time she had one. After taking her off the med (since it was meant to be temporary anyway), seizure skyrocketed almost immediately.

This past Sunday they got so bad that I took her up to the ER in the morning. We decided to adjust one of her regular meds and we went home after about 5 hours of sitting there. Well, it was short-lived... I ended up taking her right back in that night around midnight.

The seizures were just coming one right after another. She happened to have one while they were getting her stats in the ER and immediately the nurse called "Red Patient" and rushed her back to a gurney. We rounded the corner, me pushing London in her over-sized stroller and the nurse carrying the machines she had just hooked her up to, and that was the first time I've ever seen so many doctors and nurses rushing toward London. They quickly transferred her to a gurney and began suctioning out her airway and placing an IV. I tried my best to stay out of their way and also be close enough that London could hear my voice telling her I was still there. I was thrown about a billion questions at once... what medications is she on? What doses is she getting? When did she last have them? How long has she been having seizures? Has she been sick? Do her seizures always look like that? Has she had any surgeries? How much does she weigh?

I tried just focusing on what needed to be done. London was breathing and her eyes were dilating, but she was unresponsive to all the pokes and commotion. They gave her a bunch a rescue medications, swabbed her sinuses, took chest x-rays, and then it became a waiting game.

They didn't know whether to take her to the ICU or the NTU (Neuroscience/Trauma Unit). The thought of ICU scared me. She's never had to spend time there. But we've spent enough time at the NTU that it didn't seem so intimidating anymore.

We ended up in the NTU around 5 hours after arriving in the ER. I was dead on my feet and thankful that I'd get a few hours of sleep. London was so pumped full of rescue meds that she wasn't seizing anymore.

Long story short, we ended up spending two nights there, counting the night in the ER. After an allergic reaction to a new medicine they wanted to try, we decided to put her back on the temporary one from before. Things were still going well after we got home on Tuesday, but I'm starting to think that's only because she had so much rescue meds running through her body still. I've noticed things starting to go back downhill. I'm trying a few things at home before I do anything else.

Things are a little more stressful with my husband working overseas for the next 4 months (we dropped him off at the airport the day before London went to the ER). Thankfully I have some pretty amazing friends and family that love and support us!

I'll try to update again soon...