I’m seeing that a lot of people are coming to my blog after searching “External Ventricular Drain”. There’s a post about my son when he had one.
It was a challenging time, but he went through it just fine.
I’m writing this post to invite all those who are wrestling with such unforeseen challenges in their lives or the lives of their loved ones to email me with any questions they might have, or just want to talk to someone who has an idea of what they might be feeling.
I have found that it’s the support and love from both loved ones and strangers that really lifted our family through the tough times we had last year. I’d like to be able to offer that same support to others.
Dandy-Walker is not a death sentence. Hydrocephalus, if treated, is not either. Both are manageable, and do not have to cause insurmountable problems. There is much you can read online, and many resources that can educate and help. I will try hard to be one myself.
Email me. Call me, even, if you want to. Eight oh One, Six three six, two zero two six.
–Sean
I have been looking on the web for people who have hydrocephalus and they blog about their experience. I stumbled upon your blog and I have been reading your posts. I was born 6 weeks premature, and I developed hydrocephalus at 6 weeks old. I was then shunted at 2 months. I have had 15 revisions, one due to a thought to be infection, and the rest for blockages, 6 in the span of a month. The worst part about having an infection in the shunt system is that they have to externalize it and they then place it in that machine that you put a picture of. Every time that I got up, they had to turn it off, let me go do what I had to do, and when I would lay back down, they would have to realign everything. It was such a pain!! I have now gone a little over a year without any complications (Knock on wood!!!). I will keep you in my prayers and I will be following your blog.
Casey — I’m honored to have you visit my site, and even more to leave a comment. You sound as though you have invaluable and profound experience with your own life. You have my prayers and thoughts. I would love to know more about you and your experiences, and I know my wife would also love to know more. We’re always talking about our son and what he might be going through, and what we need to watch for. It’s no fun, to be sure. Thank you for your contact!
Sorry about getting back to you so late. I have been busy with school and studies. I would like to email you, but I do not know your email. You have put your email on one of your post, but it is a link and I am for some reason, unable to access this link. If you could, please send me your email. I would love to get in contact with you and talk about your son and what all I have been through with my hydrocephalus. There is also a forum that I am a part of that is all about neurological disorders and it is a great place to go and vent your frustrations or ask questions. When I get your personal email address, I will send you a link to the site. I would like to do it that way to reduce spam to the actual forum. There is also people who have blogs (parents and adults that have hydro) that I follow and I have found it a great kind of therapy to be able to read other peoples blogs and to know that there are other people out there that are going through the same things that I am, and the same struggles. I would greatly appreciate it if you would contact me back. Thanks.