Monday, August 31, 2009

it feels like 2 years ago to this day...

Since Natalie was given the all clear at her pediatric cardiology post-op from open heart surgery almost 2 years ago (and I think Ricky can agree with me here) we breathed a big 'ol sigh of relief and felt more at ease with her heart condition. Not to say we were completely at ease because we weren't (and aren't) but we were able to push her condition and limitations to the middle of our brains from them being front and center. We had her last pulsox (oxygen saturation) level back in April and hadn't had a new reading since living in "the mile high city". But, we never stressed over it because she was doing so well.
The stress level in our household went down and since then we've been so lucky to switch the focus to our major Colorado move, getting James entered into preschool, and so many other things.
One of my biggest fears with preschool is (can you guess it??) ..the dreaded germs. I would be kind of stupid if I said that my kids never get sick anyway, and having to pay the extra attention to Natalie depending on what the bug is, reality has always set in with getting sick. It's a part of life we all hate but, it's still just that, a part of life. The biggest fears that we have of any of our kids catching are the dreaded flu (any of them), stomach flu, and RSV. And in that are mixed illnesses caused by those illnesses (pneumonia for example). This is probably alot of parents fears so I know I'm no different.
But then there's Natalie. Having a special needs child like her is slightly tougher because we already know that anything James brings home she'll get most likely. It's always been that way. And then she'll be the lucky one to bring home her own germs once she begins preschool next year. So, there is never any way to avoid any of it once you do the simple hand washing and other cleanliness.
So anyway, I think the big concern today at Natalie's pediatric checkup (she was able to meet her new special needs pediatrician who in simple terms "is awesome") was that her oxygen saturation level was at 79. But let me back up here for a second- they always take her pulsox when she's screaming and crying ..the number pops up and they declare that the official number of the day. Kind of like Sesame Street but not as fun. They did that today and it's frustrating because her color was beautiful, nice rosy cheeks and pink lips, and then the machine stopped immediately once she was settled down. But, we take the 79 as a concern, not a huge concern, but definitely one worth looking into. So, we are going to get Natalie in to see the first Denver Children's pediatric cardiologist we can get. Luckily, we have her pediatrician and her office on board and they are treating Natalie wonderfully. We're in good hands and lately, I keep hearing other health professionals say "Oh I know that doctor she's wonderful. Oh you're in good hands!!" So, that is really easing our stress. It feels so good to hear so many people rave about her. OH and did I mention our pediatrician's office is 2 blocks away from home??? That is the coolest thing.
So, we are sort of back to about 2 years ago from today. Watching her closely and keeping her condition back to front and center. Beginning this fall we are back to giving Natalie her synagis (RSV vaccine) which really bums us out. We went from officially done with this monthly and dual shot vaccine to today's saturations bumping her back into automatically qualifying her for it again. With James starting preschool, we really can't take the risk of RSV. It's a good thing, but I can't lie, it sucks she has to go through so many damn shots again. *sigh*
But, she is growing beautifully and they are so pleased with her gross motor skills especially comparing to where she was even since April (and even then was doing very very well). They are very excited that she's in the Early Intervention Program here and speaking of which, Natalie has her first physical therapy appointment here at home on Wednesday evening.
So all in all, Natalie is doing well. She just needs that extra bump in getting her heart checked out sooner than we expected (just think, her Hopkins April visit said she could wait a whole year..) and once we get her to that appointment we'll know alot more. We'll have to be sure to squeeze in a tour of the Denver Children's Hospital too. We keep hearing it's wonderful and even resembles a shopping mall. If I had to get my next heart surgery that's where I would want to go.
For now, we keep on truckin'.

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