Friday, March 11, 2011

Day 4, 8:30 AM

For future reference I'm writing myself a blog-note: I have been counting the days wrong. In the hospital, the day of surgery is Day zero. "Day One" in the first day after surgery so my posts are misnumbered; I'm one day ahead.

One thing I wish I would have realized going into this is just how much pain Joy might be in the first day after surgery. Everyone I spoke with mentioned in general terms that the first few days could be very uncomfortable. But I didn't quite get it --the same way it is hard to "get" anything before you've experienced it.

Now I do. The next time we do this --Joy will very likely need this same proceedure again in five or six years --I will ask that the orders for pain meds be written a little more broadly so the nurses that first night have some back-up options they can try. Because this was Joy's first experience with this surgery and these meds, the best the doctors could do was make and experienced educated guess about what might work for her. Now we all have some experience to work from.

One thing we've added seems to be a nice addition so far: oral Baclofen. Baclofen is a standard anti-spasmodic drug in the arsenal of treatments for kids who have spacticity with their CP. But after discussing it with Joy's doctors, we passed on Baclofen in favor of Botox and Phenol because given over an extended period of time, at a dosage sufficient to reduce the spasticity, oral Baclofen can impair cognitive function and have some other neurological side effects. (Baclofen administered by an implanted pump has different effects but Joy, at the time we last considered it, was not the ideal candidate for a Baclofen pump.) But we decided to try oral Baclofen to help with the post-surgical spasticity on top of the Phenol that was injected on Tuesday. Because she may only be on it for six to eight weeks, we're not as likely to see the side effects. It will be interesting to see how it works.

My husband just arrived so I'm headed home for a few hours.

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