Post-Op Update

The wait on surgeries is a notorious combination of boredom and anxiety, though Dr. Boop significantly diminished the latter with his early morning announcement that the procedure would be much simpler than planned. Fortified with snacks and ample access to the internet, we were prepared for the long haul, but only an hour after we got the call that they had opened we got another call that Dr. Boop was scrubbing out and ready to talk to us.

It’s a bit like jury duty where a quick decision usually suggests a particular flavor of result and, just as the last craniotomy with Dr. Boop ended surprisingly early with good news, today’s speedy surgery was a positive sign. The guidance system dropped them on top of the tumor, where it was adhering to the top of the ventricle and fed by a single large vessel. They were able to cauterize it, remove that tumor cleanly, and look around for the two suspicious spots seen on the St. Jude scan.

Though we can’t say what those spots represent, Dr. Boop was confident that there were no tumors in those spots. Coming off of the rocky ride on Wednesday, our Friday has been a steady rise in the best possible direction.

The Known Unknowns

Aside from the evidence of rapid proliferation we discovered with the growth of Colin’s new tumor, the two suspicious spots indicated the possibility of seeding and a disease that was spinning out of control. The problem wasn’t as much what we could see and remove but the known unknown of other tumors too small to be detected by MRI or Dr. Boop’s microscope.

The big unspoken fear was that this situation had declared itself as one that could not be easily contained and that would necessitate the use of the big guns, craniospinal radiation, sooner in the timeline than we would like.

Today’s news doesn’t mean that Colin is out of the woods; he will never move out of the woods, even if we don’t see another sign of ependymoma for another five-plus years. It doesn’t even mean that this microscopic process isn’t happening right now. However, it does give us hope that Colin hangs in the balance somewhere between the indolent disease we had originally hoped for and a virulent one that we had come to fear on Wednesday.

At this point, I have no idea how to interpret the differences in imaging. The St. Jude scan is very high resolution diagnostic imaging intended to give us the most accurate picture of what’s happening. The planning MRI performed at Le Bonheur is aimed at giving the surgeons the best picture of the anatomy and key features. To the casual observer glancing at a few images in the OR, it looked much less scary than the image that stared back at us in the Star Trek room at St. Jude (I call it the Star Trek room because of the console of huge flat screen monitors to show comparisons of scans).

Ultimately, it doesn’t really matter because we have to operate within the limits of all the tools at our disposal, whether in diagnostics, treatment, surgery, etc. There are and always will be limits in these tools, and nobody ever has perfect knowledge of anything. The best we can really do is triangulate to an understanding of what we’re facing and how best to deal with it.

That said, it’s much more comfortable operating in the space we occupy today compared with Wednesday. We have breathing room and the added bonus that Colin escaped a more complicated procedure that was clearly not necessary for the job.

Road to Recovery

Full-on anesthesia is never a treat, and today was no exception for Colin. Though he arrived to his room with a smile or two for us, he was feeling pain and nausea, and we went through a few barf bags as we figured out how to balance the drugs that were leaving his body with a new set to make him comfortable.

Fortunately, the head isn’t full of nerves and the primary source of head pain would be from the trauma to the skin, according to Dr. Boop. He warned us that Colin would probably have a headache, which was certainly the case. It just took a few tries to make sure we had the right amount of morphine and not too much. For a while, he maintained an equilibrium of modestly pukey and pretty happy.

In the midst of this, Colin wanted to Skype his second grade class. He happily showed them his new scar and chatted a bit, though with a few bouts of yakking in the middle. I answered some questions for his friends and tried to show them his new scar, which wasn’t particularly gross looking, especially through the foggy filter of Skype. It is a sinuous line bound by the pale thread of dissolvable sutures and traces of dried blood. They left so much hair that there is very little exposed skin to show off the ropy snake of the future scar.

Colin also got to talk to Aidan briefly before we started managing logistics of his temporary parent-free existence in Ithaca. As part of the swinging pendulum of Colin’s case, we haven’t been sure if Ian would have to extend his stay in Memphis, but, barring a major turn of events here, he will go back as planned after the weekend.

After our Skype adventures and a second anti-emetic, Colin fell asleep for a while. After waking up, he was happy to watch movies, joke around with his nurse, and stubborn about his toileting habits. With a constant flow of IV fluids, he soon needed to go to the bathroom. He utterly rejected the plastic urinal, so we helped him walk to the facilities. During one of these numerous visits, Dr. Boop walked in and exclaimed that he didn’t look like he had brain surgery today.

With the bathroom visits and general wiggliness, we were able to dispense with the pneumatic leg cuffs that help prevent deep vein thrombosis (a risk with Colin’s clotting disorder, though his clotting factor wasn’t particularly elevated based on pre-op labs).

Probably the biggest indication that Colin was well on the road to recovery was the steady stream of food that he demanded throughout the afternoon and into the evening. One plate of mac and cheese, half a (huge) serving of chicken alfredo, a plate of tater tots, two jellos, one pudding, a bag of goldfish crackers, and three mini cupcakes later, he distinguished himself with a remarkable post-surgical appetite.

All of the large people in the room agreed that he should ease himself back into it, but he lustily seized his opportunity to be king for the day. When Ian tried to play a movie he didn’t want to watch on TV, Colin shrieked, “Dad, I’m sick!” With the food, he had no patience for our suggestions to temper his appetite. Nope; I had brain surgery today, so I’m calling the shots.

Truth be told, Colin knew his gustatative capacity better than we did, marching through that parade of food with nary a hiccup. Let’s just hope he doesn’t have to stay on post-op steroids too long.

Tomorrow, we expect to move back to the neuro floor and the relative comfort of fewer tubes and wires. The arterial line will come out in the morning after labs, and he really doesn’t have a pressing need for IV fluids at all. The presence of the port means that there’s no compelling reason to preserve any of his peripheral IVs, another quality of life benefit of that particular device.