Monday, July 11, 2011

Day Nineteen

Kara ably summed up the day. Returning to the PICU feels like we've come full circle. Our nurse is the same- we've stayed in the room next door before, and the one down the hall. Our favorite fellow is back with us- and we know the sex of the baby he's having in a few weeks. Any day now I suppose. It was three weeks two and a half weeks ago. We miss the in-room bathrooms from the floor but welcome the heated blankets (which we horde). We still have no idea what the future looks like.

James' sodium levels are improving. We finally got a chance to see his CT scan and the swelling which is concentrated in his brain stem region is obvious. This region coincides with where James had both his surgery and the location of his tumor, so we suspect that some correlation exists, though it may not be explained. Dark, empty spaces mark the ventricles on the scan. James is missing one- a sign that the brain has swelled into the space. This is likely attributed to the sodium deficiency, but the sodium deficiency itself remains unexplained. It's a common problem in brain tumor patients, but we take little comfort in that.

A direct correlation exists between the number of doctors you see and the level of concern about your case. Today we were shooting for the trifecta. Or whatever you call more than a trifecta. Quadfecta? The endocrinologist, with his merona tie (props for savings) flipped inside out our entire conversation and his hands tucked in his pockets, did resemble the neurologist. He also loved to pontificate on hormones, which must come in handy in his line of work. I'm glad, because as the day wore on, our 20 minute lecture in anti-diuretic hormone production and impact came in extremely handy. I even supplied the name for ADH for one of the oncologists at one point. He had a single groupie, the handshake and listen variety.

I am pleased that once neurology showed up they acted promptly. I am less pleased they showed up less than promptly. Although he said he'd heard of the seizure before he had not heard of James' lethargy, which concerned him much more. This is frustrating because it reinforces the feeling that you, the doctors, and the various specialties are playing a game of telephone in which your words, the residents words, and the nurses have to be filtered through several layers before they get to the specialty who needs to make the consult. When they do, key pieces, like lethargy, may be left out. The neurologist gained a fresh sense of urgency when he learned that but we had to get our intern to call him twice to tell him about it. Our intern's been very good to us, and a useful sounding board for our concerns, which have multiplied dramatically over the last 24 hours or so. She's an ally. Our neuro-oncology crash course took a detour through endocrinology, with a touch of nephrology for good measure.

James gets good care on the PICU, but he needs good care now. He's not stable enough for anything else. We're supposed to be starting chemo and James can't even stay on the floor. In addition to the complications of chemo, our move is made worse by the fact that so many of the creature comforts we acquired on the floor- from the air mattress to the less frigid thermostat, aren't options here.

James' appears to still be having seizures- little ones, lesser ones than the huge one last night. His pulse shoots up and he'll have apnea spells. It does seem to be getting better. We're hoping that it is just the sodium- because we can certainly fix that. I worry it's not. But I can't go there right now.

I am trying to stay positive. To locate the good. James grabbing my finger still. The CT scan not showing any spread of the tumor. I'm naturally a cynic- but ironically this process has made me much less cynical. I'm not sure I'd survive if I kept at that. Thank all of you for your support today- it was a long day, and we needed every bit.


  1. Just wanted you to know that people in Burnet, Texas are praying for james and the family!

  2. May God's peace and wisdom be with you right now, and may your sweet child feel only comfort and love...we continue to pray for him constantly.