Lessons in Patience

Over the past two days, we’ve learned that hospitals desperately need an overarching system of communication that makes doctors, nurses and therapists from every department talk to each other about each patient. Entering things in each patient’s computerized chart supposedly gets information from one person to another… but it only works if they put the correct information in the computer and if they bother to check what’s in the computer! So far, our experience shows that the computer does not communicate between all fifty (or more) hands that are trying to heal Kevin.

Yesterday we saw how this miscommunication is not only inefficient, but can be harmful to patients. We learned early Monday that the radiation oncology department prepared a radiation plan for a glioma—not a medulloblastoma. Throughout last week, various doctors were still deciding which type of tumor Kevin has. We were told that the radiation oncologists were preparing a plan for both, and once the final pathology came down, they would go with whatever radiation plan matched the pathology. Of course, what we are told doesn’t correspond with what is actually being done.

The one piece of good news in all of this: the pathologist signed off on the report that Kevin’s tumors are medulloblastomas (he technically has two tumors in his brain stem). However, on Monday morning, the radiation oncologists realized they had only been planning to treat gliomas. They had to start planning from scratch in order to treat medulloblastomas. So, instead of receiving his first radiation treatment on Monday, Kevin spent a couple more hours on the imaging table so the radiation oncologists could plan for the correct treatment.

Kevin was upset by the news that radiation would start Tuesday afternoon instead of Monday. At least the delay is only a day, but no one with a brain tumor wants to waste time in getting it treated. He has grasped onto the idea that as soon as radiation starts, he will start improving. Kevin has been improving over the past week, but he has trouble recognizing his improvement. We hope that once he starts radiation, he might see that he is slowly getting better.

To end on a positive note… we have a new #1 shake: the “Old-Fashioned” Chocolate Milkshake from Peninsula Creamery. I even had a taste—it was pretty darn good. We’re still working through all the shake suggestions, so I’ll keep you posted if we have a new winner!