SEEG surgery gone wrong

Weslee's May 1 2019 SEEG surgery went really really badly.    (Reminder, it was to help us get data so we can make an informed decision as to the next step: VNS, RNS, surgery, etc.)

The surgeon marked on the head where to drill the holes through the scalp and then the skull so that he can thread probes through the holes, reaching various depths and components of the brain.  Weslee had 7 probes put in his head, then was sent to Recovery.  He had a hard time waking up, but after about an hour in Recovery, he was sent to the ICU (intensive care unit).  If not for an on-the-ball nurse (Shane) noticing that Weslee still wasn't quite waking up, and that the left side of his face was going slack, my son would be dead.

See, it's rare that SEEG probes leave a track of blood/bleeding as they go in.  But still, sometimes there might be ONE probe that will cause bleeding.  EVERY ONE of Weslee's probes bled, causing the brain to swell and preventing Weslee from waking up fully.

Shane immediately called the surgeon who, luckily, was still in the building.  He ordered a CT scan, stat, which showed the massive bleeding.

The surgeon took me aside and said "your son has an abnormal amount of bleeding in his brain.  If I don't operate immediately to release the swelling and pressure, your son WILL go into a coma and die".

I will never be able to forget the look on his face, and the urgent sincerity in his voice, and his terrifying words..

Needless to say, I gave him permission to do the follow up surgery.

Long story short (I know, too late!), he had a stroke from all of the brain bleeding. He had a breathing tube for almost 2 weeks, two brain drains (temporary shunts, one on each side of his brain), and a total of 7 surgeries in 16 days. After getting a permanent shunt on day 16, he was moved to the epilepsy ward on day 17, and less than a week later, moved to an inpatient rehab facility.  He had to work hard so that his left side functioned again. 

We didn't get any information/data from the SEEG.  It would have been corrupted because of the brain bleeding and swelling.  The probes were taken out shortly before he got the permanent shunt.

He goes home tomorrow. The plan is to get evaluated from an out-patient rehab facility, and to continue his physical therapy, occupational therapy, and speech therapy.  He also needs new glasses because his eyes aren't tracking together, and he has double vision. The local YMCA is allowing Weslee several free months to use the pool for his physical therapy.

We never did get a 100% definitive answer as to what caused the bleeding.  The general consensus among the 5-10 doctors he saw every day was that one of his seizure medications caused it. One of those super-rare side effects.

Ask me if I'd do it again, knowing what I now know.

No. I'd rather have him on medications for the rest of his life.  Weslee has a long road to recovery.