We have been lucky enough to celebrate a lot of milestones in 2014 - both of Avery's corneas turned 1 year and she finally started talking. But today marks the most important milestone to date - her shunt was last revised one year ago today. In our little world of Hydrocephalus, that's a really big deal. Avery's shunt malfunctioned twice last year, the first one with many months of sickness leading up to it, and the second time was just shy of 3 months from the first revision. Each time her shunt malfunctions (which means it either plugs up with scar tissue or brain matter, or the valve stops working for some other reason), she gets extremely lethargic, vomits and has a massive headache. This last happened on August 13, 2013, and I got a call from John while I was at work. That was also my last day of work, because I had decided on top of everything else going on at the time, I wasn't about to be absent for another shunt malfunction. It's treated as an emergency when kids with shunts show these symptoms, as pressure from accumulating fluid can cause major damage to the brain, and if left too long, can be permanent or even worse. Avery was so bad last year, that in pre-op, she was basically unresponsive to any physical test. It was terrifying to watch and we were on the edge of our seats waiting for surgery to finally happen the next morning to provide some relief. The other issue with shunt revision surgery is that it's brain surgery. There's no short-cut or way around that. The chance for infection is pretty high, especially in warm summer months, and even if the surgery is successful and you are discharged after a few days, the worry of an infection will haunt you for months (or a year, if you're me). There's an initial hurdle to overcome, which is the shunt making it for three months after it's revised. Statistically, the shunt is most likely to fail again in the first three months, but a failure can happen at any time. So basically, not one single day goes by when we don't worry that this could happen. Believe me, I'm ecstatic that we've reached such a long milestone, especially based on how last year was going, but the worry is constant and never-ending. We still keep a video monitor on Avery's bed and any sign of a cough or weird noise, I'm stiff as a board, holding my breath, hoping it's just nothing. That terrifying sound of your child with hydro vomiting in the middle of the night or first thing in the morning will never leave your memory, and every one of us knows things can turn on a dime.
I was so skeptical that this shunt would last past the three month mark, let alone a whole year. And that's not me being negative, it's because my kid scares me so many times. If you know us (or read this blog), you may recall the persistent stomach-bug masquerading as a shunt malfunction she had from September to October of last fall. It got me each and every time she woke up puking in her bed. "This is it, this time it's her shunt, I just know it..." and then it wasn't, thank God. I kept praying for her to stay healthy just until we brought Lucy home from the hospital, and then I upped it to when Lucy's sleeping through the night... and then it just kept going. Then there's the changes in weather affecting her shunt. If there's an extreme change in barometric pressure, she sometimes gets bad headaches, which make her feel awful. We have watched her go through this for so long, we're pretty in tune to her mannerisms and signs that something's going on. She still doesn't understand how to tell us that she has a headache, so we're really looking forward to when she's able to communicate better.
Avery missed so many days of school in the Winter and Spring of 2013, and this past school year, she hardly missed any. It's absolutely amazing what she was able to achieve without the effects of pressure on her brain or surgeries. She came so far this past year, and even if everything changes tomorrow, I am grateful for the progress she's been able to fit into this year. We've met a lot of other Hydro families via social media or local support groups, and we know that not everyone is fortunate enough to make this milestone. It's a scary, awful disorder and the very reason we fund raise for Hydrocephalus Association is to push for research towards better treatment. I pray that in Avery's lifetime, she won't have to forever rely solely on her delicate shunt to keep her healthy.
So today is like another birthday for my girl - Happy Shunt Anniversary... ice cream for everyone!
