Well, they've postponed surgery again until Friday. They took her off of her paralytic yesterday, but she still hasn't moved. I'm sure she will make it through all of this, but it's so hard to wait... I just want results, movement, anything to show me that she's ok. I know in my heart she is, but I want to SEE it, too.
The little boy next door is even sicker than she is, I think. We've heard his monitors going off all night, and today there were a ton of people in there working on him. They took him away, taking our nurse with them, so I know it's serious. It's so sad, because his family is hardly here. Yesterday by the elevators I heard the mom say that there was no point in being here, because she can't do anything. Meanwhile, I see the little guy twitching and responding, which is more than I've seen the entire time we've been here with Sadie... I just don't understand people.
There are so many sad stories here. We've gone to the McDonald house since we're going to be here for so long, and I hate it. We only sleep there when needed - I spend all the time here that I can. Anyway, everyone there wants to "share" their stories, and I'm just not up for it right now. I don't want to hear anymore sadness. I'm surrounded by it all day. I need to hear some happy endings (if you find any, forward them!! I love reading about TGA babies that have normal lives - even if it's the same story again and again.). There is one couple that looks no more than 20 or so that had a baby at 6 months - her liver, kidneys and lungs are all failing. It was everything in my power to sit and listen to their story. The thing that bugs me the most, though, is other moms crying to me about their babies that aren't nearly as sick as Sadie. I know it sounds harsh, but I just don't have the strength for it, and I don't know why everyone has to tell me their story. I don't want to be reminded how really sick Sadie is. I don't want to see hopelessness - I refuse to give in to it. I do understand the need to tell your story again and again... I've gone through that phase a few times here - but only when people ask about her, or why I'm here. Sorry for that random venting session - it's just my pet peave of the moment.
I did get to get out to dinner last night, and got treated to my first margarita (thanks Lauren!). It was the best I've EVER tasted, and I really needed to just laugh and get out for a bit, even if it was only a couple of hours a mile or two down the road. I am so lucky to have such great friends and family that have surrounded us with love and support. I don't know where I'd be with you guys.
The cardiologists' PA is meeting with us at noon today, so we'll learn more about why the surgery is postponed and what to expect in coming days. I've been reading more on the internet, and have added some new links for anyone interested in what the surgery is.
Monday, September 11, 2006
Monday Morning
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