Today Mike looked really good. Sleepy, though. I didn’t get as much alert time as I did with him over the last couple of days. We had a nice visit. Cara came and Susan stopped by. Mike’s eyes were closed for most of the visit, but his color was good and he smiled at appropriate times, indicating that he was eavesdropping as usual.
He was probably sleepy because they hadn’t fed him all day. He was NPO because he was getting a PICC line put in today. Freaking PICC line. Turns out that because he had his PICC put in by PICC nurses and not some fancy specialist (I forget who) he could have been eating the whole time. AGH!
The PICC ladies asked why he still needed a PICC (this is his 4th!) and I explained that he needed blood draws every 6 hours for labs and that his veins were IMPOSSIBLE to find. As I’ve explained to others, I’ve seen 5-6 nurses try for 1.5 hours with an ultrasound machine to locate veins and NOTHING. Well, the PICC ladies said that PICCs really aren’t supposed to be used for lab draws – that drawing blood through PICCs increases the risk of infection. They said it is done sometimes out of necessity, but is not ideal.
They also said I should keep my eye on it and make sure he nurses follow PICC protocol with proper sterilization and flushing of the line etc. How the heck can I keep my eye on it? Sheesh. I’m not there all the time. So, I talked to the nurse the nursing supervisor about it and they put a sign over Mike’s bed and an order in his chart about using proper PICC protocol to reduce infection risk since he’s had the line so long.
Also, I have met this fantastic firecracker of a woman through the craniopharyngioma listserv whose grandson has one of these S.F.T.s. She has lots of insight and experience with hospital bologna and encouraged me to talk with the nurses about getting Mike’s urinary catheter out. Today I talked with tons of people about it. The nurse, the nursing supervisor, the N.P., and Evans’ nurse, Kelly. It is fair to say that the nurses might want the catheter to stay in because it reduces the amount of work they have to do. But, if Mike is aware of his need to go #1 (which we’re not sure of yet since the catheter’s been in so long), then he’s going to have to learn how to manage this with his visual deficits. Plus, having to use the bathroom is a good excuse to get him out of the bed more often. So, while it will be logistically difficult, getting the damn thing out is my latest little project. Thanks, Jalena.
The verdicts from second opinion doctors are coming in. Sen (NYC) says current course of action is appropriate. Spetzler (AZ) recommends a 2-stage surgical procedure, first in from the side and second in from the top. I’m eager to hear was Laws has to say. I’ve heard nothing but good things about him.
I hope you all have a wonderful weekend. We are so lucky to have so many amazing friends in our lives who are helping us through this situation. I talk about it all the time, but I can’t emphasize it enough. We couldn’t do this without all of you.