It's been a minute since blog updates were needed, and for that we are massively grateful, but here we are again.
Evan started middle school this year. There has been a lot of change, a lot of homework, and a lot of headaches (figuratively and literally). Last Saturday Evan's headaches were so bad that he stayed home from a play we were going to. On Sunday he stayed home from church. On Monday he was in so much pain that we started to seriously consider going to the emergency room just to rule out shunt failure. My hesitancy was the fear of waiting for hours and then not being taken seriously (which is what happened last time he had a shunt failure). But when his pain quickly turned to nausea and vomiting I knew we were in trouble. Learning from the last shunt experience, we chose to go to UC Davis rather than the closer hospitals because we know they have a good neurosurgery department and can communicate easily with all of Evan's imaging, notes, and doctors at UCSF.
When we arrived Evan's headache had subsided and again I worried they wouldn't take us seriously, but when you check in and say your child has headaches, vomiting, and a shunt, they wasted no time and let us skip the waiting room and get right into a room for testing and evaluation. I was relieved when they wanted to do an x-ray of his shunt track, a rapid mri of his ventricles, and they preventatively placed an iv to draw labs. Evan didn't love all the sit around and wait, but I was glad that they were being thorough.
The first indication something was wrong was at the x-ray. The shunt usually goes all the way to the abdomen (which I've seen on Evan's x-rays before), but the tech showed me how Evan's shunt stopped at his chest. He said, "Usually I do one more picture of the abdomen but I don't need to because I can see that it ends here."
*Spoiler alert: We had to go back and take one more picture of the abdomen, where they found the remaining coiled tubing that had become disconnected from the rest of the shunt. This was likely causing his shunt to not work, and it was looking increasingly likely we were headed towards shunt revision surgery.
The doctors were calling UCSF to discuss their thoughts on whether we should go there or stay here. We wanted to do whatever UCSF said because they're the doctors who did his last shunt and have managed his care for the 11 years since then. UCSF said they felt fine either way. We opted to stay for the convenience of the location and the good reviews of the neurosurgery team at UC Davis.
The holdup was wanting to confirm via mri that his ventricles have changed from his most recent mri. The doctors were waiting on imaging from UCSF. I was able to pull up his most recent mri on my phone so I walked out to the doctor to show her. Immediately she said, "Oh, that's very different from today's." And she showed me how last time it was all grey and even and today had large white spots which is the buildup of fluid in his brain. It seemed at that point things started picking up pace. We signed consents, did a shunt tap, and did a 2nd mri to get a closer look at Evan's brain anatomy for the possibility of an ETV procedure (more on that in a minute). When the risks were being explained, Evan got pretty emotional. It's the first time he has had shunt surgery where he's been aware and old enough to know what's going on. He said, "That's a lot of risks." I told him that's true, and the risks sound really bad (uh, hello--death?!), but the risks are also very small. I told him about how Dad and I have been told these risks every time he's needed shunt surgery, and we've always made the decision that is the best for him for the long term, and he's always been okay. He said, "I want to see someone before surgery." I said, "You mean, you want to see Dad?" He said, "Yeah." Isaiah was happy to come and have a few moments before Evan had to go in. But since he had work the next day I was the lucky one to stay for a late night surgery and overnight recovery. I was actually shocked they scheduled surgery so quickly. I thought for sure it would be scheduled for the next morning.
Evan was so brave--no crying when I said goodbye at the entrance to the OR. Surgery went well. I was thrilled that he woke up quickly after in the recovery room (a pleasant change from the last shunt experience). He had some funny answers when the doctor came to check on him.
Hi Ethan, tell me your name.
Evan.
Oh, right, sorry. Where are we?
Here.
Right, but where is here? Where are we?
We're here. (waves arms all around)
What year is it?
1995
Are you sure? Is it 1995 or 2025?
(mischievous smirk)
What did you do today?
A lot
Why are you here?
Hmm...maybe to shave my hair?
I cracked up, but honestly couldn't quite tell if he was being cheeky or loopy. But the nurse told me he had already woken up and correctly answered everything so he was fine. Then Evan asked me, "Is my watch charging?" so I knew he was back.
The next day was the slow process of checking things off for discharge: Eat, drink, go to the bathroom, walk, manage pain, follow-up imaging, get visited by some Star Wars characters.
He was hesitant to move around at first because for the past few days he had so much discomfort when changing positions. I think he was surprised to feel better after surgery than he did before, and no more headaches! He has recovered SO quickly. He has some incision pain and skin irritation, but in retrospect he has probably had a very slow shunt failure over at least the past couple months, and so I can only imagine how nice it must feel for him now to have a clear head. Today is day 1 at home and he was asking to go ride his bike or scooter to a friend's house. Sadly, those are both major NO's right after brain surgery. But he did walk with me to the park and sat and talked with his friend like nothing had happened. He is such a tough kid. He's excused from school all week but he said if I let him he could go tomorrow. I'm not going to let him.
Now for details about the shunt surgery for those who appreciate the medical details. The old tubing came out, but since it's old and has likely adhered to things over the years it broke off when being pulled out. This was expected. Evan's broke around the base of his neck, so the segment from his neck to chest is still there. The broken-off coiled catheter in his abdomen is also likely attached to some stuff and would cause more harm to remove, so it's abandoned and will live in him. A new, programmable shunt was placed. It has the ability to adjust how much fluid it drains.
In addition to all this, Evan's doctor, Dr. Sadegh, has been trained in a procedure called Endoscopic Third Ventriculostomy (ETV). As I interpret the doctor's explanation--don't quote me on this--our upper 3 ventricles in our brain typically drain through a certain passage into the 4th ventricle. Evan has blockage through that passage which is why his fluid builds up in his brain without a shunt. The shunt allows the fluid to have a path down to the abdomen where it is safely absorbed into the body. There is a location in the third ventricle where there is a pathway option that bypasses the blocked area. It has a thin membrane at the top. If this membrane can be reached and punctured, the fluid can drain through that way. When Evan was an infant they evaluated his anatomy to see if he was a candidate for the ETV and he wasn't. They said it was too hard to access. Dr. Sadegh saw a possible route there. He said he would try to do it, but if it seemed too risky then he would stop. Regardless, Evan would have a shunt. But if he had the ETV then he would have less reliance on the shunt which means less risk of future shunt failures.
The report after surgery was that the first membrane was punctured, which some people would consider an ETV. But Dr. Sadegh's training taught him to also put a hole in a membrane at the bottom of this path. That one he couldn't safely get through, so he considers Evan to have a partial ETV. They set his shunt accordingly to pump quite a bit of the fluid out rather than relying on the ETV. However, prior to discharge they did a follow-up mri to check the fluid flow. Dr. Sadegh called me to say he was very surprised that the flow looks really good at the ETV site and it seems to be working better than expected. So he changed the flow of the shunt to essentially be off. We will continue to monitor regularly over the next few weeks and months to see if this holds true, which would be great news for Evan in the long run.
As always, times like these allow us to see how much goodness is out there in the world. We have had countless offers for meals, childcare, visits, treats. Thank you to everyone who has cared, prayed for us, asked for updates. We're so lucky to have the best community and family around us. Thank you.
