Monday, March 21, 2011


Warning, this is going to be a long post as I wax poetic, and also just unravel the experiences of the last few days. I don't talk about it that much, but our oldest son has hydrocephalus, which is treated by a VP shunt to divert excess CSF to his body cavity. This was diagnosed a few days before his first Christmas, and he had emergency brain surgery to put in the shunt. Since then, I have been scared shitless of the day if Brandon would ever need a revision in case the shunt failed. It has only been in the last few months that I have been been able to let go of some of this fear and stress, learning that it was never when the shunt would need replacing, but if.

That being said, last Tuesday Brandon got a random headache and started vomiting. He reported falling at daycare when questioned, but could never provide a lot of details about this experience, and no one saw him fall. We weren't sure if it is was a concussion, or the start of a flu (he had had a headache when we were in Hawaii with that flu, but he also had a fever and the vomiting and chills), or if it was something else. Wednesday morning Brandon was fine, until just before heading to work, the headache and vomiting came back.

Spent a few hours at home, Ken came home, I went to work... only to have Ken call to say he was really concerned since the headache lifted again, but came back with a vengeance. I came home from work, time passed. We had free tickets to the Canucks game so Ken went with a friend (I wasn't up to leaving or going out), and things just never got any better. A lot of vomiting (never had so much laundry to do in my life), and the headache just wasn't lifting. I had spoken to the neurosurgeon fellow at Children's and since Brandon was cognitively there, and it could have been a concussion, we weren't too worried... yet.

Thursday morning we dropped Connor off at daycare and went in to Children's. We had a CT scan within 2 hours, which really didn't show anything. Our neurosurgeon admitted Brandon for observation, and after a medication to stop the nausea, Brandon stopped vomiting, but the headache continued to progress. Ken went home to be with Connor, and in the wee hours of Friday Brandon's headache reached unreal proportions and he was in a lot of pain -pain not touched by all of the pain medications he was on. He was literally out of his head with pain, and then he would sleep for 20 minutes from exhaustion, until the cycle would start again. With the neurosurgeon and a few nurses, we did a shunt tap at 3am, discovering the shunt was not working. It was time for emergency surgery. It was a terrible phone call to make to your partner at 3am - come... our boy is going in to surgery. O M F G.

The team was assembled, and they were amazing. They didn't know what they would find, but what they found is that the catheter leading from the shunt valve in to Brandon's ventricle was no longer working - they replaced it, and tested the rest of the shunt (which was working and didn't need replacement)- and finished off. Everything was a success, and even in post-op, talking to Brandon, I had my boy back. He was no longer in pain, and was no different than he had been before the headache hit. He looks no worse for wear, a shaved patch on his head, a few stitches, lots of that pink antibacterial wash all over his body (no shower until tomorrow and no bath for a week after that to allow the stitches to fully heal). He is happy again, talking up a storm.

We were discharged from Children's on Saturday and going home was a joy. I have been afraid of a revision all this time, and it was the best thing that could have happened when he needed it. Talking to the neurosurgeon, this catheter is shorter, and better placed in the ventricle, fingers crossed, this should be it. I also know what to look for next time, and seeing him a few days later, already not needing any Tylenol, I am just grateful.

Last night we ended up having a bunch of family over and it was awesome - the best noise you could have asked for. Ken and I and the boys may just need time to get over this, but to have been surrounded by all that love last night, it was just magic. We had Brandon's favourite meal (roast beast, carrots, potatoes, and lava.. and then chocolate cake) and he played lots hockey video games, and we let him sleep in our room again, just because.

This all feels slightly unreal, we are home today and then we are doing a graduated return to daycare over the next few days. I am thankful for FB.. I was a bit nervous about posting something before we went in to surgery, but Ken posted what we were going through, and I am so grateful for the outpouring of positive thoughts. For such a difficult experience, we had amazing care, from the ER staff, to our nursing team, to the people we met in the ward, and our doctors. I am grateful Ken and I are a team in the true sense of the word - you realize how much so when you go through something like this.

Now, life moves on. Brandon is doing awesome, and I am sure at some point in the next few days I will quietly fall apart, and then put myself back together again. I feel grateful, and nothing but gratitude

No comments: