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I'm sorry, our son's scan shows *what*?

Updated: Mar 11

Imagine that you have a happy and healthy teenager in the seventh grade who has all the confidence in the world. He plays flag football and performs in the school musicals and plays. He loves Legos and is obsessed with the family dog. He has lots of friends and has such a good time with them at school. School was pretty effortless as far as academics were concerned. You'd never expect that one morning his brain would explode.

His poor classmates. It was morning drop-off. They witnessed his collapse and had to come get me and my husband while another teacher stayed with our son. Those kids were traumatized, and I know that at least one never recovered from witnessing that trauma. What the kids told us was that our son had been being silly and tried to jump a bench, caught his foot, and slammed his head on the ground. He was unconscious, breathing only about every 10 seconds, but my husband could feel his pulse.

When the first responders arrived, the woman leading the team checked him over and couldn't find any external head trauma. They kept asking us if we were sure he hit his head, but that was all the info we had. As they were trying to backboard him to get him loaded, he started doing what they call posturing. I could tell by the way the woman was talking that she was really trying to hold it together, but inside she was really freaking out. I knew that posturing was bad and a sign of severe brain trauma.

Our coworker helped us get all of our son's stuff and put us in the car to drive down to UC Davis Children's Hospital. In between texting everyone I knew to send us good vibes, we were shaking our head at how a momentary lapse in our son's judgement was changing our lives, but we were not prepared with what we'd be told when we arrived at the emergency department. Probably 10 minutes after we arrived, neurosurgery was in our son's room telling us he had a ruptured brain aneurysm and to expect he'll be in the PICU for at least a month. We kind of freaked out, and the surgeon revised his timeline to two weeks, I think just to help us feel better.

Our son was being moved from the emergency department to the Interventional Radiology suite so they could map the blood vessels in his brain. They sent me up to the PICU and said I could hang out in the room they were preparing for him while we waited for this procedure to be completed. The hubby ran home and packed bags for both of us. The neurosurgeon came in to see me after he was done. It was about 7pm by this point.

The neurosurgeon gave me 2 options for treatment. The aneurysm was near the center of his brain, and we'd later learn it was classified as a "near-giant" aneurysm. The first option was to open his skull and put a clip across the aneurysm. This might not be possible because kids' brains take up all of the available room inside the skull and also kids' brains tend to get a lot angrier with injury than an adult brain. If option 1 wasn't feasible, they'd move to endovascular coiling to hopefully buy our son some time for his brain swelling to get better. Coiling is NOT a great option in kids. The coiling tends to move, the rupture starts all over again, and the kid likely dies. The neurosurgeon said they would wait until the morning because we didn't want tired surgeons working on our kid's brain, and the after hours crew was not as robust as the crew on during the day. The neurosurgeon said his normal complication rate is 7%, but given all the info we had now, he said our son's rate of complication would be more like 30%. So now, we wait to see if he will make it through the night.

The morning came, they took our son away to surgery and told us it would be several hours before he would be brought back. We had a few visitors (we had to meet outside due to covid restrictions) who brought supplies, comfy sleeping things, food, etc. By the afternoon our son was back from surgery, heavily sedated, and not really responsive. We could tell that he was no longer moving his left side. They asked for a repeat CT 6 hours after surgery just to check on things. Let me tell you, do not ever let ICU staff tell you "no news is good news." Push for those results. The team did not tell us our son had had an embolic stroke after surgery and that's why he couldn't move his left side.

The next morning things were going well. We woke up to the team telling us they had been weaning him off the vent all night and they were doing a final test to see if they could remove the vent. A couple hours later, they did just that. We felt so happy that things were progressing well! Even my surgeon friends couldn't believe that he was off the vent less than 24 hours after brain surgery. Maybe we wouldn't be here for that long after all! Then the night came...

Our son stopped responding to his PICU team. His pupils were unequal and sluggish to react to light. Our room had a whole lotta people flood into it. They decided his brain was swelling due to the surgery and the stroke. I'm sorry, what stroke? His brain was already angry from the ruptured aneurysm and the blood that was outside the vessels. Add to that, swelling from surgery, and swelling from the embolic stroke. They pushed a bunch of mannitol through his IV to get him to shed water to bring his brain swelling down and whisked him off to CT. By the time they brought him back, he had shed enough fluid that he was responsive again and his pupils were back to normal. Unfortunately, this would only last for a few more hours.

One of his main neurosurgeons came to do rounds in the morning and we talked to her about what happened overnight and that things were looking a lot better. She walked out of our room, but thankfully didn't go far. Literally 20 mins later during shift change, it was noted that our son's pupils were unequal and sluggish again and he wasn't very responsive. I told them his neurosurgeon was on our floor and to go find her. Again, we had a ton of people flood into our room, they pushed more mannitol and tried to keep him awake and whisked him off to CT again. This time neurosurgery came back with consent forms. They wanted to remove half his skull to allow his brain to swell and he would need to have the vent placed again. The anesthesiologist asked us to ride the elevator down to the surgery center and to kiss our son. I'm pretty sure they didn't think he'd make it out of surgery. In fact, I found out later from our son's neurologist (that he had seen for the past 5 years for ADHD issues) that the hospital had called him and told him they didn't expect our son to make it through surgery.

Somehow, he did make it through surgery and came back to the PICU heavily sedated. We watched in horror over the next 10 days as the swelling ramped up significantly and shifted to different parts of his head and neck as his body was dealing with all the fluid. Remember the disfigured character in The Goonies? That's what he looked like, for weeks. We didn't recognize our boy anymore. We couldn't bring ourselves to take pictures to document this journey we were all on.

The next 2 weeks was a waiting game to see how much better he would get and when could we wean him off all of his IV meds. He spent 16 or 18 days on a vent, complete with contracting pneumonia. At the 3-week mark, they finally moved us out of the PICU and onto the regular pediatric floor. We were waiting for our insurance to finalize our son's physical rehab contract, which took another week. The big question was whether or not he would regain any use of his left side. Would he be able to walk again?

Once he could officially start intensive rehab, we had all kinds of evaluations. PT, OT, Speech, dietary. We met all kinds of wonderful therapists who really worked hard to move our son forward in his healing. Probably one of the hardest things to learn about first-hand is the age regression that comes along with a stroke. I woke up one morning to a kid who thought and acted like he was 2 years old. Nobody warned me this would happen, but after checking in with Speech Therapy, learned this was common in stroke survivors.

Our son spent the next couple weeks riding around the hospital in a wheel chair, but as time went on, he started walking again. I remember the day they had him try walking for the first time and how excited he was that he was doing it! We'd do laps around the peds floor to work on his strength and stamina during our "off" time from active rehab. Then we got to a point where he could walk longer and longer distances, but I'd follow behind him with the wheel chair, just in case. We'd play games in his hospital room to work on his cognitive rehab. They worked on his upper body also. Because he had to wear a helmet when out of his bed (remember, they took half his skull off), they'd often give him sheets of stickers that he'd practice peeling with his left hand and then he'd decorate his helmet. They thought he'd be in inpatient rehab for 5 weeks, but it turned out to be shorter.

We still had to take a kid home that had to live in a helmet. We had to wait for the brain swelling to go down so they could put the bone back. Oh, did I forget to mention they throw the bone they cut off into a freezer and then put it back later? Yeah, that was kind of wild. 2 months after his discharge, he was re-admitted to have his skull reconstructed. He spent the summer going to outpatient rehab. He was quickly discharged from Speech therapy, then soon after, Occupational Therapy. It took another 9-ish months of Physical Therapy before he was discharged from that. He also had significant damage to his eyes due to the lack of blood flow during the aneurysm rupture, so we also added vision therapy to his mix. After a year of that, he was finished with that program.

He started his 8th grade year on time, which was a miracle. He had modifications, of course, but he did it! He even played piano at 8th grade promotion (we added piano to his rehab to help his hands learn to work together again). He's now in high school and doing well with the extra supports he's getting. The hardest part for us is seeing his lack of social interaction. He's still somewhat age-regressed and happy to play by himself 90% of the time. It's hard seeing status updates on social from families who were also in our class getting to those next milestones with their teenager (driving, etc.). We aren't sure if our son will be able to drive, or if he can, when that will be.

He continues to do everything he can to move himself forward in his journey. I hope he realizes there isn't anything he can't do considering everything he's already overcome. We are almost at the 2-yr mark from his injury. We are celebrating by him playing piano for me while I sing at a recital that our music teacher is putting on.

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Mar 08

This is such an amazing story! Thank you for sharing! I had a massive ischemic stroke and partial skull removal . Mine was out for2.5 months until the selling went down enough that they could out the bone back in . They said that is common in young brains . Is what dictors told me. I am also left side affected . 3 years later I'm still working on rehabilitation . Thank you for sharing your story!

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