Scheduling Challenges

Tyler had a long day today, although most of the time was spent waiting around. He had an 8am appointment at UW and then 11, 12:30, and 1:30 appointments at SCCA. The biggest challenge of the day was that he wasn't allowed to eat before his 1:30 appointment, so he was hungry the whole time he was sitting around.

I was supposed to take him to his appointments, but opted out for illness reasons. I've been feeling a cold building for a few days and finally had a sore throat last night in this morning. The SCCA's policy is that patients can go to their appointments when ill, but must wear a mask. Caregivers and other visitors must stay home if sick, as they do not NEED to be at the appointment. I hate the rule, but probably should follow it.

Since early fall, we have actually had to fill out a form before proceeding to any of our SCCA appointments. They ask if you have had any signs of a cold or the flu in the past week. Both patients and their companions are supposed to fill out the form and get a sticker in return that says "I've been screened."

So... Andrea (Tyler's mom) took him to his appointments and I went to work instead. Isn't that crazy? I was sick, so I DIDN'T take a sick day from work. But... it was good to save my leave for another day when I can be of more assistance. And I was able to teach the class I had asked a coworker to cover for me. And just for the record... I DON'T recommend going to work when you are ill. I'm just crazy.

Unfortunately, I also have to keep some distance from Tyler at home too. I have to remember not to kiss his gorgeous face as I might unintentionally pass along some of my germs. Let's hope that I get healthy soon. I had planned to work Thursday and Friday of this week, while Andrea took Tyler to his appointments.

Tyler reports being tired and achy today, and reported a slight temp during his evening nap. Other than that, he looks good. They reduced his TPN (IV nutrition) dose today, so he'll be eating more and more over the next week. Things are definitely moving in the right direction now. We just have to get him as healthy (and now me) as we can over the next week, so that he can be successful during the transplant.

Thanks for cheering with us about the results from the lumbar puncture. It's great to have so many friends and family members cheering with us!