Monday, March 12, 2012

Yet another quiet day - for the most part.

Today was probably Evelyn's most restful day thus far. She didn't have many seizures, and just generally rested really peacefully. The only break from that quiet was the 'first trach change' - which went very well. The surgeon felt that the surgical site (aka stoma, aka hole in Evelyn's windpipe) looked just as it should, and the whole process of changing trachs took less than one minute total. After the trach change was over, Evelyn settled right down and went back to sleep. At that point we were officially able to start weaning the sedation, and we were put on the transfer list to move to the TICU. (a cozier section of the hospital)

Honestly, the more I learn the more similarities I see between a trach and a g-tube (feeding tube). Neither device is terribly complicated, and while both provide very valuable and in fact life saving services to my daughter - I think I could probably teach a second grader to properly care for both. Not that I would do that - but suffice it to say that we feel optimistic that we will pass our training.

I think because the trach is revealing itself to be such a simple device, it makes me a little sad that I viewed (and people with them) with such trepidation. It was never a hard decision to do for Evelyn what she needed; including getting a trach - but it was hard to imagine her having one, and the stares and lack of understanding that that would add on top of her wheelchair, feeding tube and obvious physical limitations.

I'm so glad that we've been blogging through all of this, because I don't want anyone that is a part of our life to feel like they're 'in the dark' about who Evelyn really is. I also don't want anyone to feel like they can't talk to us about this stuff, or that they can't ask questions. I thought trachs were scary, because I didn't understand how they worked or how to manage/care for them. They aren't scary to me anymore - though I respect the fact that your airway is a pretty critical area, and plan to ask as many questions and be as hands on as possible in the hospital so that I feel comfortable once we go home - I don't feel intimidated by trachs anymore. I hope that this blog will help eliminate some of the intimidation that some people feel when facing children or adults like Evelyn.

Tomorrow we will probably see a slightly dopey, slightly grumpy, slightly sleepy Evelyn. If she's occasionally also sneezy, bashful and happy then we will have covered most of the seven dwarves... :)