Lots to Learn
If you think about it, it isn’t often in life that you face a situation where you have no idea what you’re up against. Even when these situations do present themselves there is usually a time of preparation. A time when you can do a little research, make a few mental plans, and just get used to the idea that something new is on the horizon. Not this time.
When Kayleigh took Declan in for his well baby visit we just expected that by the end of the day we’d know how fat our little boy had gotten, and how much “taller” he was. We had no idea that in a few days the ultrasound we’d take him to purely as a precaution would result in his being diagnosed with a condition that will likely be with him for the rest of his life. We left the Neurosurgeon’s office armed with a pamphlet from the Hydrocephalus Association, their website address, the knowledge that he’d be having surgery in a few days, and little else.
There were so many new terms thrown at us Hydrocephalus, Aqueductal Stenosis, Shunt, Endoscopic Third Ventriculostomy. There were so many stories out here on the internet to read. There was also still a job to go to, 2 children to bathe and feed, and plenty of dirty diapers to change. It was clear we had a lot to learn. We did spend some time browsing the internet, looking up some of these terms, reading a few (horribly scary) stories, but for the most part we would show up at the hospital on Wednesday, May 25, 2011 with only the vaguest understanding on what was going to happen once they put him in the cage-like crib and wheeled him down the hall. All we really knew was that they were going to be performing brain surgery on our tiny 2 month old little boy.
I can say with an absolute certainty that a large part of our lives will be devoted to learning about, and staying up to date on the condition that has effected our Declan. I am unspeakably thankful that we live in an age where you can copy and paste a term into a search engine and find abundant information on any topic. I can’t imagine what this experience would’ve been like just 20 or 30 years ago. So, even though we were completely blindsided by this, at least we know that we can go to Google at some point and get a push in the right direction.
(A note on the photo: This was taken at about 3 weeks of age.)
Posted on May 27, 2011, in Declan's Diagnosis and tagged Aqueductal Stenosis, ETV, hydrocephalus, shunt. Bookmark the permalink. 4 Comments.
It’s such a mixed blessing. On one hand, there’s plenty of information, on the other hand… worst case scenerios seem to pop up first.
We have been cautioned to try to stick with the “medical” parts of the Internet. At the same time though, there’s always something you can pick up from other people’s experience. I suppose that’s really what this blog is for.
Everyone that I’ve ‘talked to’ online has had good happy things to say. Just remember to keep the statistics in perspective, even on the medical sites. I’m hesitant to use WebMD anymore, because they’re as bad as House (the rarist most least likely and devastating answer to every medical problem).
The statistic are probably the most horrifying thing about this whole thing. And they’re hard facts, not just a number out of nowhere you know? 40% of shunts fail in the first year!