Khabarovsk; Craniotomy and AVM Resection

8:29pm  When we first got to PICU around 4:150pm, all the physicians and nurses were delighted to tell us how smart and funny he is.  Christopher's speech was slurred, and he was telling everyone everything about everything.  But then his mean arterial pulse (MAP) got higher than they wanted, he kept going tachycardic, and he was really agitated.  A dose of pain meds calmed him down and he went to sleep, so Scott and I rushed to grab dinner in the food court.  Unfortunately, he was agitated again by the time we got back, and we found the nurses had just topped his fentanyl off with Tylenol. They're still titrating his nicardipine upwards, as his MAP is still hovering around 75.  As long as he's calm, he's no longer tachycardic, and watching Home seems to be a good distraction right now.  He was having intermittent double vision, but that might be clearing up.  

Initially, in Mr. Charming Phase, Christopher was ecstatic about all things and how amazing it was to be AVM free.  Now, he hates hospitals.  But where before he was really upset about his sore throat, now he's complaining about how much his head hurts.  He often has an anxiety attack several hours before a major spike in his headache, so I suspect that was the source of the earlier agitation.  A nurse has pretty much been in here the whole time adjusting his IV bags and meds and checking his stats.  Hopefully that will change soon.

As predicted, the left arm and leg sensation and motor control deteriorated.  His arm is pretty weak, but he can direct its movement and wiggle all his fingers.  His left leg went completely numb for awhile, but his foot sensation is back.  He cannot move his toes, but if he really concentrates, he can lift the leg a bit.  He is now aware that it is numb and unresponsive, and is definitely disturbed by that.  But since the leg has improved from its 4pm status, the neurosurgeons feel confident it is all temporary.  In general, they're quite pleased with his status, but did go ahead and prescribe Cepra as a prophylactic against seizures, which is fairly standard in neurosurgery patients.

The incision site is larger than we expected, and looks a bit like a tonsure, but so far, he has only mild swelling in his scalp and face.

3:29pm  He's out.  He's awake.  He's calm and responding well.  Drs. Tamargo and Ahn just came to visit us.  The AVM is gone.  The walls were so thin, they could see the blood flowing through the them.  So, it was about to rupture, definitely within the next few years, and it did begin leaking as they pulled out the nidus.  The left side is responding well, he can move his fingers and even his toes, but he definitely has weakness in the left leg.  They warned us that as swelling sets in, it will get worse before it gets better, but they are hopeful it will be temporary and he'll regain full use.  Christopher did need blood transfusions, but nothing "out of the ordinary".  PICU should allow us back to see him within 45 minutes.

Stroke Watch 2016 is over! Next phase, AVM recovery....because I need this kiddo back. The one that ran a 10k on the Great Wall of China last year. The one who said, "But Mommy, I can't just walk. I have to run."

1:17pm  Supposedly, the OR called Reception at 10:18am to say they'd started the craniotomy.  Reception says not.  No idea what happened there, but I've been a ball of nerves trying to figure out why a one hour angiogram had turned into four.  When we hadn't heard anything by noon, Reception called the OR for us, and then said they were still doing the angiogram.  Just now, Reception told us things were going well, but had no idea whether they'd started the craniotomy or not.  I started shaking, so she called the OR and let me talk to the nurse.  Craniotomy started at 10:18am, they think they are halfway through, and they currently have interventional neuroradiology in again to check the status of the AVM.

Official AVM Ejection Photo.  And modeling of the Johns Hopkins University Hospital Garage Charging Spots

10:00am  We made it to Surgery Day.  In theory, Stroke Watch 2016 is now behind us.  Christopher was amazing this morning.  Mr. Charming himself, the pre-op nurse was convinced a little man was hiding in his young body because he totally took charge of answering all the questions about his medicines, food/liquid intake, everything.  He had to explain what Stroopwafel is, since that was his 10pm snack last night.  Scott is here with us today, so we played Mad Scientist Mad Libs while we waited. He is definitely concerned about having not just one, but two IV lines, and also the arterial line.  Christopher told me last night he’s not scared of the surgery per se, just what happens after he wakes up.

Me, too. 

Mad Scientist Mad Libs

We met his anesthesiologist and anesthesiology fellow, his operating room nurse, and saw both Dr. Tamargo and Dr. Ahn before they took him back to the OR.  I pointed out the stereoscopes, the fellow took charge of the gas that put him to sleep, and then he was out.  No crying, no balking, very calm.

His OR nurse and anesthesiology fellow beginning the prep work after he was out.

It took them right at an hour to get him prepped for the pre-op angiogram, they should be nearly done with the imaging now.  And then the neurosurgeons will have the information they need to decide exactly where to place the hole in his head and the removal of his arteriovenous malformation will commence.

I expect a call soon letting us know that they are done with the angiogram and beginning the craniotomy.  At that point, we may look into donating blood, as Dr. Tamargo told us he's quite likely to need blood products today.  AVMs like to bleed.

For now, we wait.