Taishet; the Cerebral Angiogram

As much as possible, we’ve been trying to make our Johns Hopkins trips family outings as much as they are trips to check on Christopher’s brain.  This usually means booking a hotel on Hotwire (Scott’s pretty awesome at getting great rooms for good deals) and staying overnight so we aren’t pressured by the Capital Beltway—I95—395 traffic gauntlet.  After our first visit with Dr. Groves, we all went to the Baltimore Science Center for the first time.  Since cerebral angiograms are officially “minimally invasive” outpatient procedures, we booked a hotel for two nights, this time as well.  The idea was that I’d take Christopher to Hopkins at o’ dawn-thirty while Scott took the other two children to the Science Center for another field trip.  The next day, we’d all go to the National Aquarium together.

Image 1--The Children's Tower at Johns Hopkins University

Christopher displayed no nerves whatsoever either in driving to Hopkins from our hotel or while in PACU awaiting his procedure.  In fact, the same incredibly charming demeanor he’d had at Inova Children’s in April was on display.  I asked him about it afterwards, commenting, “I thought you hated hospitals and needles?”

“Well, yeah, but hospitals actually do stuff.  Doctors’ appointments just ask lots of questions without fixing anything.”

Image 2--Smelling anesthesia flavors; he chose cherry.

Out of the mouths of babes.  He’s not necessarily wrong.  The anesthesiologists were quite concerned that his headaches were still getting worse even though Dr. Bernier had adjusted his dose to 20mg amitriptyline two weeks’ prior.  So they decided they’d try to give him some extra fentanyl during the angiogram to see if they couldn’t relieve the headache.  We also got a full description of the cerebral angiogram and how it works by the pediatric interventional neuroradiology resident.  Say that ten times fast.  He asked if we knew what it meant, Christopher said no.  I told him, “Interventional Neuroradiology” means they use radiation like X-rays and gamma to actually treat and fix the diseased tissue inside of you, not just image it.  Pediatric means they only treat kids.”  I got a gold star for the day.   And then it was time to wheel him back to the angiography suite, the anesthesiologists cracking horrible potty humor jokes the whole time.  They put on the mask, I gave him a kiss just before he lost consciousness, and then I went to the waiting room.  

Image 3--Ready to Go, calm as a cucumber; the anesthesiologist is pictured on the left.  I tried to remember his name, I've failed, but he was awesome.

Dr. Monica Pearl, the interventional neuroradiologist performing the procedure, walked me down the hall, since she’d been at the weekly neurovascular conference and hadn’t seen us earlier.  I felt, at that point, that everything was coming together.  When we’d seen Dr. Bernier for his headache follow-up, she had told us we should seek out a second opinion regardless of what Dr. Ahn told us regarding the AVM, just because it’s such a big thing.  When I asked who at Children’s National she recommended, I was told all the complicated cases are referred to Johns Hopkins, and Dr. Monica Pearl is the best. 

Waiting is hard.  Luckily, I was at the climax to The Maltese Falcon, but even then is was difficult to remain focused.  Also, that hospital is cold.  Even in a sweater.  Finally, I got a phone call from the nurse saying they were taking him back to PACU and everything had gone well.  Next I got a call from Dr. Pearl wanting to know where to find me so we could discuss his results.

As much as I was hoping for Option 1 or 2, as outlined by Dr. Ahn, I didn’t really expect it.  From the very, very little I’d allowed myself to research on AVMs, Christopher had enough symptoms it didn’t seem likely this was a nothing.  And yet, we were all still hoping he was undergoing a very expensive procedure for a nothing diagnosis.  Dr. Pearl, however, quietly told me that there is, indeed, a true AVM in Christopher’s brain.  It is small, just under 2 cubic centimeters in volume, it isn’t hiding an aneurysm, it has only superficial veinous drainage, all good things.  But it has to come out.  It’s in prime real estate, so if it were to rupture, the damage would be catastrophic.  She had already taken the images for the gamma knife surgery, because she, too, thought it was inoperable.  And so I cried.  I was expecting this result, but the reality still caught me off guard.

And then I put myself together and went in to see Christopher around the corner in PACU.  Honestly, he wasn’t in great shape.  The breathing tube had scratched his throat pretty badly, so I spent the next several hours offering him sips of popsicle slushy every few minutes.  The first two hours of laying flat didn’t bother him at all, he was too preoccupied by the sore throat and I had his iPad monopolizing his attention with Zootopia.  The second two hours at a 30 degree incline weren’t too bad, either, although sometimes he slipped and we had to make adjustments.  By then, he’d moved on to Home.  The fentanyl they’d given him for the headache worked to lower its intensity the first part of recovery, but his headache was worse than usual by discharge and they’d given him IV Zofran for nausea.  But he did his laps around the unit just fine, the catheter site had no hematoma, and he was able to walk on his own to where I’d parked that morning.  

Image 4--For the record, cherry slushies look like a slasher movie when spilled in PACU.

Surprisingly, Christopher didn’t ask in PACU about his diagnosis.  I had decided I wouldn’t offer until he asked.  On the drive home, he asked.  I was as gentle as I could in saying he definitely had an AVM and they definitely wanted to remove it.  He crumpled in the backseat and started crying.  He almost never cries in all of this.  It didn’t last long, but he was definitely in a very bad mood as we entered the hotel room.  The leg was also bothering him from the short walks to and from the vehicle, and he was supposed to have a quiet afternoon to initiate his 7 days of limited activity and no swimming while the catheter site healed.  So, we curled up in one of the hotel room beds, watching Shark Week with the rest of our family, and ordering take-out  for dinner (mediterranean kabobs  and rice, one of his favorite meals).

I was up most of the night, finally doing my research and looking at the longitudinal studies on AVMs and treatment outcomes via peer reviewed papers.  I was feeling very grateful for my training as a research scientist at that point.  As hard as the formal AVM diagnosis was on Christopher, I took it better.  I think because at this point, I’d opened up to the most important people in my life and just about everybody knew what we’re facing.  Secrets are hard.

The next day we still went to the Aquarium, although it was one of our shorter trips because his leg was sore.  He had full laryngitis by then, and the sore throat was still raging, so we treated it with Tylenol and honey tea, which helped a good bit.  And then we went home and packed him off to 4-H camp, something he’d been excited about for months.  And they, very graciously, changed two of his classes at the last minute so to meet the activity restrictions we’d only just learned about.