It's been one of THOSE days. The kind where something goes haywire first thing in the morning and then everything from there on follows suit. It started with breakfast.
Last post I mentioned that breakfast may have been an error due to the upcoming procedures. Turns out, it was. When the resident came around after breakfast, she realized that there would only be 6 hours from meal to procedure instead of the required 8. She promised to alert anaesthesia. We didn't get word that we needed to change the time, so the nurse took us down at 1 o'clock as instructed. Turns out that the resident failed to tell anyone about the meal error, so we were sent back to the floor - "Come back at three."
The beauty of being the 1 o'clock appointment is that you're the first of the afternoon. Not true of the 3 PM appointment. Babygirl was taken into MRI at 4. But before they took her I was made aware that the spinal tap would be done by a resident (okay), under the supervision of the anaesthesiologist instead of the neurologist ( less okay). I didn't have time to contemplate that before she went to sleep.
After the MRI's and the tap, a nurse came to tell me she had been taken to PACU (where?). She gave me the wheelchair we'd come with because all of Babygirl's stuff was sitting on it, and told me to take the elevator to the 3rd floor and 'go to PACU.' The 3rd floor was deserted, and there were no signs anywhere that would give me a clue which of 4 different directions I should go. I finally ran into someone who walked me there, and got me into the same waiting room where we'd waited during Babygirl's transplant.
By this time I was somewhere far beyond exhausted and maximally stressed. The poor young man at the desk asked if I was okay. WHY people ask if you are okay when you look like a grenade with the pin pulled is beyond me. Why ANY employee of a hospital specializing in desperately ill children would ask ANY parent there if they are okay defies all reason.
I burst into tears. I ranted about the fact that NO ONE told me I would need to be coming to PACU - why the hell not send me THERE to wait in the first place? NO ONE came to talk to me about the MRI results or the results of the spinal tap. And NO ONE told me how to get where I was going in a deserted building.
They offered tissues. Ginger ale. Tea. Sympathy. And got me to Babygirl, who was just waking up, shivering in reaction to the meds. We got back to our room where I let fly at the night resident about the lack of information. About the fact that we STILL haven't seen a neurologist. About the fact that the neurology team scheduled the damned tests and then didn't actually have anything to do with performing those tests. About the fact that I never even for one second met the guy (gal?) who stuck a 6 inch long needle in my kid's back.
The rest of this evening has been trying. Babygirl has just now drifted off to sleep after a lot of pain, chills, and tears. Thankfully we had picked up a collection of Madeline books in the hospital library, and reading about Paris, and the soothing language of the stories helped calm her down and rest her. I didn't need the book. I have most of them memorized.
"In an old house in Paris that was covered in vines,
Lived twelve little girls in two straight lines.....
The smallest one was Madeline."
I suspect it will be a long night. And somewhere along the way I misplaced my iPod.