We had a Cardiology appointment where very troubling news was confirmed: Natalia has borderline Prolonged QT syndrome. Her EKG score from the Holter monitor was 460, and anything between 440 milliseconds and 470 is considered borderline Prolonged QT. The more I read about it online the more upset I get about and it confuses me because her Cardiologist told me that there was no imminent danger, so who do I believe, the doctor or the internet? The bottom line is that she can never have any type of anesthesia without being in a controlled environment, that means being able to monitor her vitals and having a defibrillator handy and someone qualified to use it. Just thinking about re-living the single most dreaded event we have ever lived (Naty’s cardiac arrest last year) makes me sick to my stomach.
This brings up all sorts of issues: her hearing test was cancelled AGAIN (this is the 3rd time!!) for two reasons.
#1 still has fluid in her ears
#2 they sedate kids who are over 1yr with chloral hydrate but NO T in a “controlled environment”
So here comes the tough part: she needs to have tubes put in to drain the ears; this means general anesthesia= S C A R Y
After that she will need to have the hearing test again but in a day surgery ward, even though her sedation will only be chloral hydrate = S C A R Y
The only other alternative is for her to not have these procedures but that would mean that she would never have a fair shot at hearing better thus being able to communicate by speech. It's an extremly dificult desicion to make but Juan and I feel that we should trust the Cardiologists (we spoke to 3 of them) and give Natalia a fair shot at verbal comunication.
I feel all I can do is pray that we’re doing the best for Natalia and that these procedures work out perfect.
2/28/2008
Tough call
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4 comments:
What a wonderful blog, and what a beautiful little girl! I just want to scoop her up and hug her....I miss the days when Baylee was that little.
I don't mind at all that you've added a link to Baylee's blog and I will add your blog to my blogroll as well. I'll visit often!
Christy
I'm sorry to hear about the prolonged QT. That is worrisome, and does make for some tough decisions. I hope Natalia can have the procedures she needs done as safely as possible. It is definitely a good thing that you know about the prolonged QT ahead of time so that everyone can take the proper precautions.
You guys know what is best for Natalia.
Hi, this is my first visit to your site although Karen does keep me updated. That's a beautiful little girl you've got there, and it's so great that she's upwardly mobile. I love the pictures of her standing and walking with help. We really wish you all the best.
Christy, thanks! I´ll visit your blog often as well.
Karen, thanks for your kind words. Sometimes we can't help but second guess our decisions... But you're right: at least we know about it and we can take the all precautions needed.
Mark, Hi! I've peeked into your blog a few times (as a lurker) and always enjoy your humorous outlook on life :)
Ben is a wonderful boy, as are Isaac and Jonny. We wish you all the best too.
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