Jaxon had his fourth shunt surgery two weeks ago. This was an emergency surgery to revise his existing VP shunt, and his second revision so far. Oy.
His first shunt surgery was to place a temporary reservoir because he wasn’t big enough for the permanent VP shunt surgery (and we thought there might be a chance he wouldn’t need it). His first VP shunt failed after two weeks, with his revision happening in June 2018. Now, just over 6 months later, his third revision happened in a rush.
It was our first time going through a revision as an outpatient, having been home from the NICU since September. Not gonna lie, I was thinking this shunt would last a big longer! But, that’s the thing about shunts, they’re random. They can fail after hours or decades from placement. You know what’s great for a mom with anxiety? Put a literal ticking time bomb in her baby’s brain. COOL.
We think now that his shunt was intermittently failing for about a month before it became totally blocked and caused very noticeable symptoms. Over the month of January, his reflux got so much worse. SO MUCH. He was vomiting all the time. Which is a sign of shunt failure, but then, he vomited all the time before that too, so it was easy to write off as his reflux. We ended up having to put him on a continuous night feed from 8pm – 8am as the only way he would keep milk down (at a rate of 30ml/hour – the slowest possible). There was talk of switching him to a J-tube, which feeds directly into the intestines instead of the stomach, and would require him to be hooked up to his pump for 22-24 hours a day, every single day. We really didn’t want that to happen, but it was looking more and more like it would be.
On Tuesday, Feb 5th, we went in for Jaxon’s cardiology scans (which came back FANTASTIC yay!) and opthalmology. We knew his vision wasn’t the greatest but figured we’d be going to get a prescription for little baby glasses. Instead, we were told Jaxon had low vision. Meaning, moderate to severe visual impairment: legal or near total blindness. Not to be corrected with glasses.
Jaxon’s eyes all looked normal, but he does not track objects or respond much to them or our faces, most of the time. Sometimes it seems like he has a few glimpses here and there, and smiles and laughs. Other times you can wave your hand in front of his face and get just a blank stare.
This is what cerebral visual impairment, or CVI, is (also known as cortical visual impairment). The eyes work fine, but the way the brain interprets the messages the eyes send it gets jumbled up or is not understood. The act of “seeing” is less about your actual eyeballs and more about how the brain interprets what it’s looking at. CVI is a result of brain injury, usually a severe one, like Jaxon’s (in his case, a bleed leading to PVL, or white matter volume loss).
We were devastated by the appointment. The next day, a Wednesday, Jaxon was off and on crying most of the day, which can be another sign of rising pressure in his brain (irritability). Understandably, since pressure on your brain hurts! But, he also had really happy periods of play time, so I held off on thinking it was shunt-related. And, he was definitely cutting his two bottom teeth (still is) so I thought this was the horrible teething I’ve heard so much about (spoiler alert: teething isn’t really that bad.) 🤷🏼♀️
Thursday he was a little irritable and seemed a bit sleepier than normal. Looking back, this is when we should have taken him to the hospital, but again, it was easy to explain away his symptoms… He hadn’t slept well the night before, so maybe he was just a bit sleepy. However I should know by now that nothing is ever “just normal” for us.
On Friday he did not wake up AT ALL. He was unresponsive most of the day and it quickly became apparent that wasn’t normal sleepiness and that there was something wrong. It took a few hours for Chris to be able to come home and for us to get organized (bags packed, etc) to go to the hospital. For anything concerning Jaxon, we need to drive to the Children’s Hospital over an hour away, as other local or regular hospitals do not have the pediatric neurosurgery expertise we need for his condition, or the ability to really treat medically complex kids at all.
My husband ended up taking Jaxon himself while I stayed home with Axel, since it was already late into the afternoon. It was easier that way instead of having two screaming babies, although I wished I could have been there too. It’s so hard with twins!
Many tests were run on Jaxon, including a “shunt series”, which is all the normal vital signs (his blood pressure was very high, a sign of intracranial pressure), a CSF fluid tap to check for infection (the second most common reason for shunt failure) and a CT scan to check the size of his ventricles (if they were bigger/expanding from shunt failure or not). The results came back that the ventricles were larger and it was deemed that his shunt was blocked (by a blood clot/tissue/cells/who knows what). The only way to know for sure, or to fix it, is exploratory surgery to find the block and put in a new shunt. This is what his last surgery was as well.
Within a few hours, at 3am, his neurosurgeon (who we LOVE) was in the OR replacing Jaxon’s shunt. It was so urgent it could not wait until morning, or a Monday.
Within 12 hours, he was already so much better (though still a little groggy/drugged). I went up to the hospital in the morning with Axel to see him, and Chris slept over there the whole time (2 nights), as parents are responsible for all care of their children in the regular hospital ward (so he didn’t get any sleep). Within hours, Jaxon was back to cooing and acting more like himself.
It took over a day for him to be able to tolerate feeds again, and of course he was still in some pain for the following week as his incision healed and he recovered from the fluid shifting in his brain. They had to drill a new hole in his skull and move the whole shunt over a bit more to the back of his head, too.
Now, 2 weeks later, he is a BRAND NEW BABY! He’s back to smiling, laughing and even kicking and playing. He seems to be using his hands in new ways (holding toys, bringing things to his mouth) and I feel like he sees my face sometimes… though, not really sure. But whether he sees anything or not, he’s definitely much happier with a properly working shunt and for that, I am SO GRATEFUL.
In the midst of this, our dog also pulled a leg muscle or sprained his leg and we had to go to the vet for expensive X-rays and meds, and I was so worried since he was in so much pain. But turns out he was just being a giant 85lb baby, and he was fine within a few days.
Jaxon also started taking a soother again and being interested in bottles again! He still doesn’t take much (5-10ml here and there), but he always enjoys trying to eat.
We’re happy to have our Jaxon back! And, while there will be more shunt failures in our future, we hope the next one is far away. 🤞🏼
