CT Scan - she did it!

We have just arrived home from another UVA trip…scheduled appointments for a CT scan of the head and then a follow-up with a UVA Neurologist, Dr. Rust.

No news is good news, right? We hope so because that’s essentially what we still have. The CT scan was performed successfully, but that’s as far as our information goes. Neurosurgery (Drs. John Jane or Junior of the same) is supposed to review the scan on Friday, with their interpretation being delivered to us in a phone call Monday. Does that mean the radiologist will have reviewed the scan? If history is instructive, not necessarily. Actually, if history is instructive, neurosurgery will be asking us whether radiology has reviewed it and what they said about it. Sometimes it is very unsettling to feel that all the various specialties are referring Nora to each other but somehow the system seems to be relying on us to put all the pieces together into an integrated whole. I feel, for one, like we could so easily be missing, neglecting, or forgetting something. Also I wonder what this kind of experience is like for those whose upbringing and/or educational background have not prepared them to communicate with medical professionals meaningfully or integrate the material. To be fair, I suppose Nora’s pediatrician is the one responsible for integrating all the medical data, and he doesn’t comment much on the big picture simply because nothing that has emerged thus far from all the consultations, tests, and procedures has been very helpful in bringing the big picture into focus. Yes, that is frustrating, but we have to keep reminding ourselves that probably the best possible scenario from here on out is for this state of affairs to continue indefinitely. If current trends continue, she may establish a track record of equilibrium that makes her of less interest to the medical system as time goes by.

Neurology. It’s good that people who can deliver such scary, sad news can be as kind as Dr. Rust. It was a relatively short appointment (except for the waiting) that delivered the kind of news we’re getting used to: they can’t really see anything wrong (and this seems to be mildly surprising to them). The long and short of it is that he thinks she seems to be doing well, and yet wants to follow up with her in 4 or 5 months. If that had been our only reason for traveling to UVA, the sense of having wasted our time would be keen, though the encouragement received there will probably sustain us more than we are aware. The only thing Dr. Rust noted was the same thing others have…her tendency towards “sundowning” or rolling her eyes downwards. He referred us to neuropthalmology (sp?). An odd moment of the appointment was at the beginning, when my sister Emily’s college friend Aaron Trimble walked in the room like he belonged there! It turns out he was accompanying Dr. Rust to his appointments as a part of his medical school training.

I have thus far failed to mention the anxiety producing experience of trying to get the CT scan accomplished, but it bears mentioning. For a 3-D CT scan, the patient must keep their head perfectly still for around 5 minutes (about 30 seconds of actual scan time). It’s not that Nora never leaves her head still…how in the world can a person predict which particular 30 seconds are going to be the still ones unless the baby is sound asleep and not easily awakened by machines whirring away like a Star Trek contraption in close proximity. If it can’t be done without sedation, sedation is required. This means an overnight at the hospital, since they would need to keep her under observation until the sedative cleared out of her system. We were determined to avoid this, but it felt somewhat out of our control…without sedative there is no way I know of to force a person to sleep (maybe they should try hypnosis!)

We arrived with a sleeping baby and high hopes at a little after nine, expecting, as per verbal telephone reassurances in the prior days, that sleeping babies would receive priority, expedited service. At the front desk they made it seem that way, too. So we were surprised to have to wait in the dressing room for around 45 minutes while they made it through their scheduled prior appointments. Nora awoke about 5 minutes before they came to take us back. We were more than a little hot under our respective collars! When we finally reached one of the sanctum santori of UVA imaging, the tech who ran the thing was surprised to see a baby, and listened with (rapid) sympathy to our sob story. And Janelle did actually sob a little, which I’m sure helped. The tech explained that she had no idea what the situation was and would have surely accommodated us, had she been told. I felt like shouting, “I cannot solve your department’s communication problems!”, but assumed that doing so would not engender support for accomplishing the scan in time for the 1:30 with Neurology, and therefore refrained.

The rest of the story felt long, but it is short. They gave us a room to crash in and we did our daddy and mommy thing until she had drifted into one of her sweet-sleeping naps of unfortunately unpredictable length. With pounding hearts we notified the staff and were quietly whisked into a different sanctum sanctorum; one staffed by persons that seemed really very competent and sensible. With crossed fingers and a few people praying (some who claim not to do that very often) we watched the machine lift her sleeping little body and insert her head into that space-aged, donut shaped radiological device. Nora didn’t move a muscle. Cheers all around! Janelle and I walked out with Nora and her diaper bags in our arms and with Jello in our legs. A minute later, Nora woke up. It was 12:30. A half hour later and we would have had to walk out of there with our hearts in our shoes.

So was it a good day? I have no reasonable frame of reference for answering that question. Maybe that’s the biggest thing this whole experience is teaching me so far. Sweeping generalizations about what is bad and what is good fail to respect the nuances of true daily experiences, especially when they matter. Onward we go…thanks for listening. Jason

A p.s. from Janelle – Some might be interested to note that Nora weighed 6 lb 10 ¾ oz today (but with clothes on and on a different type of scales so who knows compared to the pediatrician’s). And I can’t think about too much else to add after a night of little sleep last night and a baby squirming on my lap. Kali had a fun day today, thanks to the generosity of Bill and Dottie who once again not only opened their home to us last night but also played and cared for Kali today.