6.07.2013

shunts are scary

...until they're not.

I so vividly remember the day (or the feeling, rather - because at that point days just melted into each other and it's hard for me to discern what happened when) we found out that Ryan developed hydrocephalus and that he would likely need a shunt.  He was diagnosed first, about a month before Aiden.  

Shunts were so foreign to us at that point, and I remember talking to a fellow preemie mom in the family waiting area about her son, who was born premature two years prior and developed hydrocephalus as a result of his brain having bled.  She made it seem like it was no big deal.  Something that was a part of him.  A simple device granting him the gift of life.  Woah, that sounds like a big deal to me.  

At that point there was a small chance that Ryan wouldn't need to be shunted.  That the hydrocephalus wouldn't progress or that it would resolve and he would be shunt free.  We held on to that small glimmer of hope, until the day that our bubble was burst and we were told the inevitable.

I've shared this before, but for the purposes of this post here it is again.  This is what a shunt looks like on the inside:

Source

There are two type of shunts used to control hydrocephalus.  VP, which leads to the stomach and VA, which leads to the heart.  A&R both have VP shunts.  So basically you have a hard plastic valve (A&R have it behind their ears) that is attached to tubing leading into the stomach.  The valve controls the flow of Cerebral Spinal Fluid and the tubing leads it into the stomach where it can be re-absorbed into the body.  Everything is underneath the skin, and there is extra tubing so that the shunt can grow with the child.  

When I first saw Ryan after his shunt placement, I was shocked at how visible the valve was on his little head.  His head was also abnormally large for his body at that point because of the fluid that had already built up.  With time, his head size and shape has improved (though he still has some lumps and bumps that he probably will always have) and the shunt is barely visible under his hair.  Same with Aiden, though his shunt seems to have really descended into his skull and you really can't even tell it's there.  

I won't lie.  I was terrified of the shunts when we first came home.  I couldn't imagine what stress we would be dealing with day in and day out, worrying if everything is as it should be.  

Shunts fail.  Most often within the first two years of life.  We were told this numerous times, and it really didn't help with the anxiety that comes with having your child endure brain surgery.  We are proof that shunts fail.  Within the first year of life, both boys had to have revisions.  As a matter of fact, Ryan has already had two.  While it's scary to think about, we thank our lucky stars that our boys came out of surgery happy and healthy on so many occasions.  And also that we are surrounded by a team of people (ourselves included) that are armed with the knowledge necessary to recognize when there is a problem.

What is the point of this post?  Well the other day a reader reached out to me in preparation of her own daughter's shunt placement.  She wanted to know if I could offer any advice, things that I wish I  would've known going into it.  

My simple answer is that it is scary...but then it's not anymore.  

Today, at 20 months, I barely think about the boys' shunts.  The first sign of malfunction is usually vomiting.  A lot of vomiting.  All day long.  Today, if a kid throws up, I no longer automatically suspect shunt malfunction.  It took me a while to get here, and for a long time I was really anxious about any change in behavior (because if you google shunt malfunction, you'll find a long list of symptoms associated with it).  That doesn't mean we don't have to be aware.  Or that we don't have some extra work cut out for us when we want to do simple things such as travel (we have to carry discs of their last brain MRIs and make sure we have the information of the nearest hospital equipped to handle brain surgery).  Or that we aren't constantly on the lookout for new treatments or techniques in therapy.  But our lives are so normal.  So happy.  So blessed.

I haven't been around in a while.  No excuse really, other than the fact that I've been enjoying my family.  Loving my life.

I owe you a post about the boys 20 month birthday :)  Seems silly, at this age, to continue with the 'monthdays'.  They're so big.  But they're learning new things every day.  I have a lot to talk about.  I just need to organize my thoughts.  

Here's to tomorrow.  

And just so I don't leave you hanging, here's a special photo from this morning.  A&R's first time playing with stickers.  My heart just melted when I walked in on this.


 

3 comments:

  1. I wanted to drop a line an reiterate just how much your blog helps me deal with the whole hydrocephalus thing. Oliver was not premature, so some of the other challenges you and your husband face so bravely on a daily basis are not something I have to go through, but the thought of the VP shunt failing still scares the hell out of me. As you have stated in your posts- it does get better, to the point where you almost forget, but you are still aware of it. I am going to take a CPR class (not just because of the shunt, but just because I am Ollie's primary caregiver...you never know when you need that kind of thing. Hopefully never, but just in case...). Your posts always give me a calmer peace when I am worried, and I appreciate it. I am glad to see your boys looking so big and healthy! They have grown so much it is astounding. I hope you and yours have a wonderful, happy, healthy Summer :)

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  2. By the way, I am on Facebook- I did not want to just send you a random friend request without asking, so if you would like, you can send a request to me and I will confirm you. I am under Susan Lawson Herzog. If that is not your thing, I certainly understand.

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