Isaiah's Hydrocephalus

Since Isaiah's surgery, I've gotten a few questions about why Isaiah needed a shunt placed and how it's changed things for him.  We're only 9 days post-surgery, but I have already been able to see changes and wanted to share them with you.

Because of the shape of Isaiah's skull, his jugular veins aren't where they should be and have trouble doing one of their jobs- getting the spinal fluid out of Isaiah's head.  Because the fluid slowly backed up and accumulated, his body made extra veins to try to help it flow but they couldn't do the job, thus moderately enlarging the ventricles of his brain.  That extra fluid caused pressure on Isaiah's brain. 

A shunt was placed to help get the fluid out of Isaiah's head. Dr. Google has provided the next two images if you wonder about the shunt.  One of Dr. C's physician assistants showed me a shunt like this:

The Ventricular Catheter is the part in Isaiah's head.  There are teeny tiny holes all around the end of it to slowly collect the fluid.  The shunt valve is something she mentioned to me...I blocked her out a bit when she was explaining about it (it freaks me out still, to be honest), but if I remember right, that's what they'll use to test it at first if they think there is a malfunction in the shunt at any time.  That part kind of bulges out of his head a bit (kind of like how Isaiah's port bulges out of his chest) under his skin/hair.  From there they threaded the Distal Catheter down to his abdomen lining (there is another incision where they cut into the lining of his abdomen to place that extra tubing). See below.

I swear, that threading of the Distal Catheter is what hurt Isaiah the most out of this whole thing, especially in the neck area. Actually, I was afraid that they broke his neck in surgery because of how he responded (and still responds, honestly) when we put our hands there to lift him....remember, we don't lift Isaiah under the armpits like a typical 1 year old, we lift behind his head/neck and bottom. I've never been more tempted to try to lift him under the armpits than I've been lately because of his response when I put my hand behind his head.

Anyway, one thing you sometimes see in young babies with hydrocephalus is that once they have the shunt placed, their enlarged head gets smaller....that won't be the case for Isaiah.  His head measures the same as pre-surgery and will likely stay at that measurement for some time...if all goes well, it'll be years before his head grows more.  This is because his skull is hard.  Thanks to the shunt, his ventricles should be smaller now and his brain will fill in the now empty space as he grows older.  I feel like I could make a joke here, but all of this medical stuff hurts my brain and I have nothing.

His soft spot before surgery feels remarkably different from before.  It didn't bulge out of his skull, but now it dips in (in a kind of I-can't-quite-touch-it-yet kind of way).  

The biggest thing is that his veins are changing.  I feel like the veins on his forehead are becoming less noticeable (unless he's sitting up and working hard);  The veins on the sides of his head used to pop out crazily- It could be the fact that we haven't cut his hair in months (and months), but we noticed that those veins are completely sunken in now.  

I tried to get a before and after picture of the side vein popping; this is the best I could find.

The past few days, I've noticed that when Isaiah is on his pulse ox (he still sleeps with that to monitor his oxygen saturation while he sleeps), his heart rate has been lower.  He's had the same baseline heart rate for the last year...but it's decreased a bit the last few days and I think that's related to the pressure in his head being relieved (and that decrease is a good thing!).  If that pressure was causing him pain and discomfort, it shouldn't be anymore, and that's evident in the heart rate numbers we're seeing nowadays.

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Ok kids, enough talk about Isaiah's hydrocephalus for now. <3 

Can you believe Wishbone Day is only 2 weeks away?????? Yeah, me neither.  

If you are new to the blog, Wishbone Day is celebrated in the OI community on May 6th each year.  It's a day of awareness of Osteogenesis Imperfecta and all you have to do is wear yellow and spread awareness of OI.  This year it is on a Wednesday, right smack in the middle of OI Awareness Week.  

During OI Awareness Week, I am planning to do a little Q&A series called OI Want to Know.  Do you have questions about what it's like to care for a child with severe OI?  I want to answer them and any other question you may have and basically nothing is off limits...OI, motherhood, my emotions, our family life, etc.

If you have a question, feel free to leave a comment on this post, email me, or send a message to Isaiah's Facebook Page.

I look forward to posting the answers to your questions during OI Awareness Week so get to asking. :)