Thursday, January 25, 2018

Back here again.....

What in the world is going on? We are back. Again. Sigh,

This past Saturday was such a great day with my little dancer. One phone call later and it's a buzz kill.

Olivia has been having "rage" sessions again, a major side effect of the anti-seizure drug Keppra. We've been down this road before with this medication, and the timing seemed right since they doubled her dose during the hospitalization in December.

For those of you that have been following our journey for awhile, I've been trying to wean her off Keppra for years. Sounds weird, right? Why is it taking so long?

It seems like I almost get her there and then boom.....she's in the hospital. The first thing they do is double it, because, you know.....Keppra is wonderful for EVERYONE. MORE=BETTER.

Not for Olivia.

For more on past side effects, please read SIDE EFFECTS ARE BRUTAL.

It's always a process when you haven't found a medicine that works, and especially when that elusive "cocktail" of meds has not been concocted.

This time was intense but it seemed like she was doing way more self harm than usual. She was scratching her face, pulling at her cheeks and biting her crazy. Most of it was done in the ER before they settled her down. Something I hadn't seen before. Something was different.

First day in they started the wean, going down faster than I had ever done with her. Like, really fast. Every three days they were decreasing it by 125mg 2x/day.

The rage against herself was not going away.

A couple days later, one of my favorite nurses walked in to say hi and happened to notice how much weight she had gained.....especially in her face. As I looked Olivia's way, I realized that her face had morphed drastically. She had big cheeks.....bigger than normal. It was then that I realized that there was something wrong with her teeth.......and after a couple xrays it was confirmed. WISDOM TEETH!!

All four were on the move, and unfortunately, they have no room.

Olivia needs them out.....yesterday. This type of procedure is typically not done in a hospital, generally it's an outpatient an oral surgeons clinic most likely.

It's been a couple days of navigating a path very few take. Doctors are not dentists and do not venture in the 3 inches or so between your chin and your nose. Some challenges have been presented and some protocols overturned.

Remember my snowball analogy I used in my last post? This hospitalization is completely different. Olivia is in A LOT of pain. Can you imagine having that much pain and not being able to communicate it? Know wonder she was thrashing at her cheeks, and biting everything in site.

Today we are trying to get ahead of the pain. We lost some ground and have been piggy backing pain meds to get it under control.

I'm grateful for the Hospitalist that has gone to bat for Olivia when hospital protocol leans toward discharge and reschedule. She literally can not handle one more day of this excruciating pain.

Please pray that a surgeon's schedule opens up, she tolerates the surgery and is on the road to recovery SOON!


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