Wednesday, January 9, 2013

Jan 9, 2013 2:40 PM
Wednesday, January 9, 2013

Our day has just started. Jacob is back on OP5 for more balance testing and his hearing screening. Hoping for good news…

I have nothing to report from yesterday, it was a bust. We started off in Pediatric Oncology at 7:30 am for Jacob to get an IV for his CT scan. Jacob likes to go there for his IVs because Radiology techs are rough. After his mostly painless IV placement, we went down to Radiology, ready to have a CT scan only to learn he was getting a series of x-rays. I read the schedule wrong. Evidently, "C-T swimmers view radiology" is a type of x-ray. So much for my medical degree! I felt so bad that I had Jacob get an IV. He didn't complain though and didn't make me feel bad either. It would’ve been nice when I checked with Jacob's nurse on Monday to make sure his CT bloodwork was done at the same time as his other labs if she had told me he wasn't having a CT. Or when I emailed them months ago and asked them what the CT was for if they would have responded. Jacob said his x-rays went fine, but they had to do two different series because of conflicting orders.

Next was the delayed MRI scan. Jacob has had it in the past, but not for a few years. They use it to view where contrast shows up in the brain. I've never been given results from this, but I know they use it for the study. Jacob said he took a nap in the scan and it went by fast. It was only about half an hour.
I was looking forward to our next appointment. Jacob was scheduled to see the oncologist fellow at 11:30 and Dr. Kathy Warren at 12:00. The fellow was very nice and asked Jacob a gazillion questions and did an exam. I had a million questions for oncology. I wanted to know what their opinion is on the chemotherapy choices we've made for Jacob and I wanted to know what other NF2 patients were doing, what, if any, new options are available. The fellow couldn't answer my questions and Dr. Warren was not going to make it to see Jacob. She was going to be tied up the rest of the day. We've spent the last three years rehashing Jac's NF2 for them in oncology and yesterday I needed something back and didn’t get it. I was not happy leaving clinic.

Our evening went by fast. Casey wasn't able to make it to visit because of a suicide attempt on a bridge somewhere between her house and NIH. The road was shut down. I'm glad to know the troubled person did not jump (or hurt anyone else) and is hopefully getting the help he needs. There was a nice family dinner at the Inn and I spent several hours chatting with Becky, Savannah's mom. I enjoyed Facetime with TD and Gavin and got to talk to Brie briefly. Jacob and I made smoothies at midnight and I finished laundry.

It was a nice morning, being able to sleep until 8 and being woken up with sun rays beating down from the crack in the curtains that I didn't close all the way. It isn't cold either.

We're one day closer to being home and I'm so regretting not bringing my running shoes!

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