Rising Storm

On Sunday afternoon, I left Le Bonheur to pick up a few things at the grocery store, walking out of the sterile air into the openness of a springlike day. The sun was bright and the air a pleasantly neutral temperature, but the sky betrayed another mood in the dark gray distance.

By the time I was on my way back, clouds limned with charcoal lurked over Kroger’s like a two-toned version of the ominous smoke monster from Lost. On the other side of the road, the sky was still light, clouds outlined in the blinding brightness of the sun.

 

 

Not Good, Yet Not so Bad

In some ways, there is no such thing as good or bad news; there is just news, and how we deal with it. Otherwise, one gets swept up in the details of relative goodness and badness and so forth. My bad news may be much better or worse than somebody else’s, and so with the good news as well.

Yet it is difficult to ignore the metaphor of the weather and the realization of how quickly one has to deal with an unexpected change. In our case, it boils down to what is a minor complication of brain surgery in a patient like Colin, a shunt malfunction.

That he has gone these months without a shunt malfunction in the face of other close calls and near disasters is a miracle, and this particular incident is far from unexpected. The process of opening up his head introduced air in his ventricles that, in turn, got into the valve of his shunt. The neurosurgical fellow flushed it on Sunday morning to jump start it, but we had been on hydrocephalus watch all day with the expectation that he would have a CT scan and possible surgery on Monday morning to replace the valve.

This is all fixable and is at the opposite end of the scale of difficulty as the Friday resection, so there is nothing fundamentally alarming about the prospect of having the shunt fixed. However, it is worrisome nonetheless to watch one’s child for signs of increased intracranial pressure and to turn back the clock to the prediagnosis days when we now know he was hydrocephalic.

Another Trip in the Hydrocephalus Way-Back Machine

It is an eerie exercise in retrospective poor parenting. Remember the time when I took him to the party and he acted dazed and wasn’t very responsive, had a hard time walking? The look on his face now reminds me of that.

Even in our hyperalertness of a possible change in mental status, a neurological red button, we did not quickly see any problems with Colin in the time since the surgery. Part of it was probably the fact that, in comparison to some of the other residents of ICU, he looked downright peachy and ready for a trek in the Himalayas.

Mind on Other Matters

On Saturday, following a very non-linear path, Colin left the ICU and settled back into his room in the neuroscience floor at Le Bonheur. The day was set to start with an MRI, but the order had failed to migrate into the computer system, so the gears had not been set into motion for it despite the fact that that it was a well discussed protocol and we had discontinued feeds (after only three hours!) at midnight.

The lapse went undetected for hours, masked in part by problems with the internal phone system that made it impossible for the ICU to call through to MRI. We had been waiting for hours for anesthesia to come by in preparation for the procedure, and finally an agitated anesthesiologist arrived and asked for a run-down on Colin, which I gave him (his nurse was attending to her other patient, so I launched into the typical summary).

He explained that the order for the MRI wasn’t in the computer, so I should go to the front desk and have them call down and make sure the MRI nurse is coming. I happily complied, always eager for opportunities to facilitate the medical process and get things moving.

This is when I found out about the phone problem and offered to run down to MRI myself to let them know. Colin was sleeping peacefully but was bound to be cranky and hungry when he woke up. Furthermore, we were slated to move back to our room on 5-South once he had recovered from MRI sedation.

Eventually, everything got worked out and he got his MRI. As we were preparing to bring him into the MRI for sedation, one of the nurses suggested that Mom carry Colin into the room and the anesthetist said, “That’s not Mom. That’s his nurse.”

After all the frustration, the moment of levity at the mistaken identity was amusing for the rest of us and (at first) inexplicably embarrassing for the anesthetist, who apologized to me no less than three times throughout the course of the day. What most mortified him, he later explained, was asking me as a parent to do something when he thought he was directing a staff member.

I was happy to do something to speed along the process. As much as this procedure would hold important information about Colin’s treatment, we were more interested in the impending move upstairs out of the ICU and a prime opportunity to go out and eat lunch (like normal people).

Between one thing and another, it took hours for us to leave the ICU. It was a relief to slide into the quiet of our own room in a relatively empty unit, since many of the patients had been discharged earlier in the day.

For whatever reason, it was only here that we were able to really look at Colin and notice that he had significant pooling of fluid around his incision site. Of course, the day after a major neurosurgery and an MRI with sedation, it is not unreasonable that he would be groggy. However, we felt that he was more zoned out than he had been earlier in the day.

We asked for somebody to take a look at him, which the resident did. After determining that the shunt was working fine, he mentioned that the air in the ventricles can cause problems and that he could return to flush the shunt if necessary.

Jumpstarts

After I returned from my shopping trip, the nurse came and assessed Colin, who was now staring out in the distance and not very responsive. In the morning, after the fellow had flushed the shunt, he became quite perky. He did a good PT session, sat up on his own for a while, and Skyped.

By the afternoon, Colin had sagged again, and a repeat flush had similar results. At this point, we expected that we were just staving off surgery. As before, the fluid collection in the back of his head served as a pressure relief valve. A CT scan on Sunday evening confirmed that his ventricles were no different than before, but we could still tell the difference in his behavior.

Revisionary

The surgeons here replace the valve on Colin’s shunt on Monday morning. This somewhat attenuates our stay at Le Bonheur, but given his unexpectedly good recovery from the big surgery, it’s the least of our concerns.

This whole process underscores the difficulty in really understanding what is going on at any moment. Diagnosing problems with Colin is easier than it had been since he is much more active and communicative, and being off of chemo helps tremendously. Even so, many things can cause irratibility and lethergy, which seem to be the main things that show up when things aren’t right in Colin’s head.

Complicating matters, Colin’s heart rate on Sunday night dropped down significantly (hanging in the 80s or 70s through the night, occasionally dropping even more). This can be a sign of hydrocephalus, and it was something we saw after his second surgery. However, they were never sure if it was really just a side effect of the manipulation of the brain stem.

As for the tumor, Saturday’s MRI shows areas of increased signal (not enhancement) that the fellow was reluctant to call one thing or another. They cleared the area that is showing up and saw only scar tissue, so it is possible that is all that remains. However, we wait for various opinions from St. Jude, which should have the scans today, before we make any announcements about the relative completeness of the resection.

As always, we spend much of our time hanging in the various gray areas of diagnosis and understanding of Colin’s state. Fixing the shunt will presumably scratch one item off the list and allow us to peel back another layer of Colin’s everchanging medical puzzle.