Frustrating Friday

Thursday Jenson got a fever, so off to the hospital Doug and Jenson go. Jenson said "My ear hurt. This one (pointing to his left ear)", so we were hopeful the fever was just an ear infection. But with any fever we have the "standard drill":

- Numbing cream on port
- Get to a doctor within 30 minutes
- Access the port
- Draw blood cultures
- Antibiotics thru port just in case it's a staph infection

The oncologist on duty confirmed an ear infection. Doug lets the nurses know we have the PET scan and asks if the ear infection will cause a problem. No concerns.

Today is Jenson's PET scan...aka the test where they "fill him full of radioactive material, but don't worry it's totally safe". PET scans light up inflammation or activity in the body to give a better picture of what is active disease vs scar tissue.

Jenson can't eat since he has to be put under. He instead carries around bags of unopened Goldfish... sounds like torture to me, but he really wanted them.

We head to the oncology clinic to get Jenson's port accessed. We've learned it's better to have the oncology nurses do the port because they are very careful in terms of germ control... it's all about avoiding a staph infection and hospital stay. Once his port is accessed, we head downtown to the PET scan/MRI department.

Then it's a waiting game... waiting at admissions, waiting in the radiology waiting area, waiting to meet the doctor. We go thru with the nurse all the normal questions and let her know he has an ear infection.

Thirty minutes later the PET scan technician is also reviewing info with us. She says, "No infections right?" to which we answer, "He has an ear infection. Oncology knows about it since they treated him yesterday."

She says, "that may be a problem".

She talks to the radiologist and our oncologist who agree it won't give a clean read since the ear will light up and may mask something else. "We'll need to re-schedule. Sorry for your inconvenience".

Inconvenience is right. Talk about frustrating... no food all morning for him, 1/2 day completely wasted, we accessed his port for no reason.

We know God has a plan, so we have to chose to trust this isn't the best one but it still makes for a very frustrating Friday.

They just call me with the re-schedule dates with the PET scan the same week as his next chemo treatment. The doctor confirms it should be fine. I'm finding it hard to believe something won't create a problem so ask, "even with all the extra things he gets that week like the chemo drugs, iron transfusion, immunoglobuin immune system booster, and prednisone?".

Technician, "Well prednisone would create a problem." Let me look at re-scheduling again.

Lesson: If something medically doesn't make sense, push, push, push. Don't be afraid to ask questions. Another example of how every patient needs an advocate.

Kristin