It has been another strange day at the HSC. Gavin’s counts hit rock-bottom this morning and won’t come back up for awhile. Despite doing yet another chest x-ray, we are still no closer to understanding why Gav continues to require oxygen and is breathing at a very rapid rate.
He was cheerful enough this morning and we played with toys and did puzzles for a couple of hours. After his chest x-ray, we waited around to see if cardio would come back to do the follow-up ECG. They finally came after I’d stepped out for lunch but according to Bubby it was a relaxed affair.
I cannot understand how this child can hold completely still for an ECG or CT scan, and yet freaks out and loses it when anyone approaches his nasal prongs. At several points today, I asked him to let me clean the prongs or at least blow his nose, and every time his heart rate shot up like I was trying to insert an IV. I tried cajoling, I tried bribing, no success. I finally lost my temper with him, which was also really helpful. I’ve decided now not to touch them at all, as it so isn’t worth it for him to become distressed like that.
Today our doctor Audrey left the unit. Losing an amazing doctor is the hard part about the fellowship program at the hospital. A certain fellow is assigned to your case for a little while, and then she moves on to a different unit, and you are left with a stranger taking over your case. We have a special connection with Audrey because she was the doctor who admitted us in the ER and has followed us throughout this journey. It seemed like synchronicity that her time on 8B coincided with ours and we’ve been blessed to have a doctor who approaches her job so conscientiously and her patients with such kindness and compassion. I was very emotional saying goodbye to her, and although I’m sure her replacement will be capable, I put my trust in her and will have a hard time adjusting to her absence. Gavin also really likes her and doesn’t yet know that she’s left.
It was also decided by the team that Gavin will need a CT scan on his chest tomorrow. Quite frankly, I’m scared. Gavin is not supposed to leave the room until engraftment, but will have to to go to CT. There is something going on in Gavin’s lungs that x-ray can’t tell us. I desperately have tried to avoid going, and fear what we may find. And if possible, all children should be kept away from the radiation of CT. One CT scan is worth about 200 regular x-rays, just to put it in perspective. Gavin has had many CT scans in his time, I don’t even want to think about what that radiation has done.
Little man also received another blood transfusion and platelets today. I remember when getting a transfusion was a novel and scary concept. Now it’s so ho-hum as to be barely remarkable. I welcome them, actually, because I know he’ll feel better and function better.
Tonight I’m asking our international support team to envision clear and pristine lungs, a nice, slow, respiratory rate and a long and restful sleep. If by some miracle he no longer requires his oxygen tomorrow, we won’t have to go to CT. I’m focussing my intent on believing this to be possible.