It is the end of what has been a very long day. Fred is now asleep and scheduled for surgery tomorrow to place a new port in his chest. He is doing well--no fevers and negative blood cultures, but he needs to be on I.V. antibiotics so we need to be in the hospital for him to get them until he gets his port placed. We had been scheduled for today, and were literally minutes away from being wheeled in to the OR when we discovered (through dogged persistence and an attentive and very caring Hemetologist) that whoever was in charge of ordering the port, ordered the wrong one.
I'm not upset that the wrong one got ordered (that's a mistake, and that happens), or even that surgery was cancelled (that's an inconvenience--though I'm sure the people whose year-end bonuses are based on hospital cost savings would have a few choice words to say about it). What really gets me even still--several hours later, is how I said over and over again to everyone who came into the room to examine Fred or ask me questions or have me sign consents that the port had to be a certain type, that hospitals don't typically carry them, that Bard makes them, that they have to be ALL PLASTIC, that we HAVE to be able to perform T2* MRI imaging to evaluate the iron content in his heart because his liver is loaded with it and that metal (of any kind) can skew the result. When Fred was in pre-op and the surgeon came in I told him (I hadn't met him before this) I had not gotten a satisfactory answer on whether he had the right port. He told me it was plastic and it was the right one. I said they make several. He said the resident spent several hours researching it and it was the right one. I said I want to make sure. He said they had been working with the company rep and the rep agreed that it was the right one. And then he left. Now at this point I felt like I was being dismissed and I could tell that nobody I was talking to had a good enough understanding of the bigger picture of Fred's medical issue. I felt like the Who in Horton's ear. Another hematologist who we know from our previous stay came into the room and I told him I was being adamant to the point of being a jerk and could I see the port. He happily obliged and marched right into the OR and brought out the port which we both saw had a small metal connector piece from the hub to the catheter. So we called it off for today. The surgeon came back in after some time to tell me I had the option of having this one placed anyway because it was safe to use with an MRI. I told him the issue wasn't safety (who on this planet would make a port that's unsafe! I mean come on, if you need a port, chances are you're going to need an MRI at some point!) The issue was accuracy. This was news he still didn't seem to accept. Shocking.
So after we were brought back to Fred's room we walked down to the cafeteria and had a big lunch, then we did a little shopping in the gift shop. A little later Mark and Matilda came to visit and we kicked the ball around at the inpatient playground and they stayed for dinner and a movie. I have a whole slew of new gray hair on my head but Fred seems no worse for the wear. Kids are truly amazing!!
Well, thanks for letting me vent a little. It was a frustrating situation that I'm not exactly sure how to unwind. I'm looking forward to a restful night tonight and praying for a successful surgery tomorrow.
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