Tuesday, April 18, 2017


I met Diane at the hospital by 8:00 a.m. so we could get some answers. Rounds are at 6 a.m. and if you miss meeting the doctor that early, you may never get any more information. I'm not kidding. It's a very strange system.

Yesterday they were trying to discharge my dad but Michael and Rachel were saying, absolutely not. He needs follow-up CT scans, has an appointment with his cancer doc on Tuesday (which he's too sick to simply jump in the car and drive back up again), he has an MRI for his brain tumor on Thursday. We need a lot more answers before sending him home.

So Diane and I were going to figure out all of this together. And we did. But it definitely helped to have two of us.

In the end, all cancer treatment is on hold until end of May to give him time to recover from the brain surgery. His appointment with his cancer doc is postponed until next week. (Because that doctor doesn't come down to this hospital NEXT DOOR... "He simply doesn't do that!" said his very adamant and protective nurse. "Shall we bring the brain surgery patient to you then? Is that more convenient for the very busy (and presumably healthy) important doctor?" "Oh no! We definitely don't do that either!" There have been so many times I've wanted to shout, "Well, what the hell do you do?!")

His Xtandi trial-drug therapy (which can cause low platelets which can cause brain bleeds) is on hold until end of May as well.

Diane finally talked to the neuro-oncologist who said his extensive MRI and radiation for the brain tumor is also on hold.  She felt good about just healing and not trying to navigate all these other things right now. They also said (in spite of what we were told by... someone.. in neuro ICU), that they had heard nothing about my dad having a brain bleed. Serious communication problems here at the hospital.

I felt strongly (since the neurologist was very adamant that there was 50% chance of bleeding starting again) that he wasn't discharged until he had another CT scan. The resident was resistant but then his attending agreed. It felt like we were finally getting things worked out and a plan in place. My dad was approved to stay at the U for rehab. I sent Diane home so she could get some rest. I stayed all day just reading while he tried to rest. The minute one nurse left, another person came in for another reason. Check vitals, empty the trash, say hi because they're from the rehab unit, etc. etc. Again, it's a very strange system. I think I could improve it. I really do. Diane came back in the evening -- we still hadn't been moved to rehab yet. (That was going to happen at 3:30 and now it was 6:00. I went home. They finally moved downstairs at 10:30.)

In other life events, Kershaw was neutered today.

1 comment:

Kristin Shaeffer said...

Hugs. I wish I could give you 100 hugs right now. and your dad. and Diane. AND Kershaw. Man! It is a good thing he is so cute.