My son's latest surgery

[vi5]

I've kind of kept to myself more or less over the past year and a half of my son's (and my) 2 year ordeal since he was born in '06. But his latest surgery is, even personal connection aside, a fascinating one to me with regard to the medical technology involved.

The medical issues he was born with are far too many to list, but the primary one he was born with has now required him to have now at 2 years old what is called a craniomaxillary distraction (AKA a jaw distraction) to basically pull his jaw out further to assit him not only cosmetically but also breathing, eating, etc.. This is, by my count his 10th surgery in 2 years.

For anyone interested in the process, we're tracking it day by day and explaining it on a blog. There's also some links to some interesting other articles on related subjects and some good causes that his surgeon is also involved in.

So, shameless plug here:

www.kjvis.blogspot.com

This experience has taught me many things, and believe it or not all the time in and out of the hospitals have shown me that as bad as he (and I) have had this, there are still soooo many out there who not only have it worse in terms of the hand they've been dealt medically but also with regard to the resources they have to be able to cope and survive with it. It's been tough as hell for my wife and I to keep it all together (especially with a 6 year old daughter as well) and we have as many resources in terms of family, work, nursing, etc. to assist us.

So...no prayers needed or anything of that nature (especially since this experience has if anything hardened my wives and my combined atheism). Just more for anyone interested in the medical technology and a link or two to some good work being done and maybe a moment to think about other people coping with what my family is but who don't have the access and the resources that we do.

[auntAgonist]

1. vi5, thank you for sharing your blogspot. Dylan is a cutie pie!

For one so young to go through so much must be very hard. (an understatement I know)

I often wonder how people manage without the resources, as you stated.


"maybe a moment to think about other people coping with what my family is but who don't have the access and the resources that we do."

:hug:

aA
kesha

edited to add. I'm reading your blog and marveling at what can be done to help your son. I cannot imagine what it's like for a parent to go through this with their child. I WILL keep you and yours in my thoughts. Best Vibes to the skilled Doctors working to make Dylan's life better.


:grouphug:

[applegrove]

2. Great vibes for your son. He'll do fine.

[GreenPartyVoter]

3. It is amazing what medical science can do these days. Here is hoping that

President Obama can make sure all Americans can get access to it.

Good luck to your beautiful family. :)

[crim son]

4. I appreciate your post, even if I can't imagine your situation.

I'll definitely check out your blog! :hug: and good luck to the wee lad. He must be a real tough guy.

[kaiden]

5. Our grandson was born in 2003 with "congenital anomalies."

He, too, has had about 13 major surgeries including skull reconstruction and jaw distraction. We just visited him today at Children's Hospital where he had his third scoliosis surgery (he'll have them every six months until he's 10). I agree. No matter how bad you think you have it, there are children and families out there who have it so much worse because they don't have the support systems we do.

And one other thing -- and I think you'll agree -- aren't these kids like your son and my grandson the bravest, strongest folks you'll ever meet?

Best wishes to you and your family.

[vi5]

6. I get cranky and need to take a day after the dentist...

..so yes, they are much brave than I will ever be. But he's taught me to be a fighter in the ways that I need to. Unfortunately spending so much time in and out of the medical system you learn that if you don't raise your voice and shout and scream and fight and demand, that the system will roll right over you and leave even the neediest in the dust.

You're grandson is lucky, as my son is to have not just 2 parents to care for him and support his family, but also grandparents. In and out of the hospitals I've seen kids have to go through this with not only no grandparents, but only one parent, or in the worst cases, no parents because the parents could not handle the responsibility and left them to the care of the state in which case they wind up living in hospitals. It breaks my heart.

[kaiden]

7. You are so right about that.

Many young mothers turn their babies over to the State when they discover their babies need a trach. And many who do keep them must have case workers from Social Services watching over them all the time.

Even though my daughter-in-law is a bearcat, she is the best mother for a child facing so many difficulties from medical and bureaucratic standpoints. I love her to death.

[vi5]

8. Hope nobody minds a gratuitous self kick...

[mainegreen]

9. .....

:grouphug:

I can't imagine what you are going through, but I am hoping for the best for you.

[vi5]

10. Thanks...

Like I keep saying to my wife, and our friends and family: We can spend our time feeling sorry for ourselves and fixating on the 90% of the people out there who have kids and don't have to deal with anything remotely like this.....or we can spend our times fixating on the 10% or so who have it worse than we do, because trust me after so much time in and out of hospitals we've seen that other 10% have it MUCH, MUCH worse than we do. So we just ty to focus on them and be thankful for what we do have which is the resources and access to handle this stuff, and also a kid whose issues can be fixed or will grow out of. And why at every opportunity we try and get people to not feel sorry for us but to understand the issues of the people who are dealing with similar issues but don't have the means to handle it was we have been lucky enough to.

[stuntcat]

11. *Dylan vibes*

Tell him some Democrat strangers have thought of him! He must be a tough little guy.