Perhaps not fireworks worthy, but that is likely because I’m selfish. I want to actually BE there, to see the good stuff, bear witness, so to speak. But Henning tells me it was a good day, and I believe him.
Henning was chosen to be part of an application development team some months ago. He has been to several meetings, been interviewed, videoed, etc. It is pretty cool, actually. He’s a ‘model patient’. So of course he is an excellent candidate for this kind of thing. It sounds like a really great, USEFUL app, too. I hope they get the funding they need to pursue it.
Today they held a large conference on (ironically?) Patient Empowerment. He had a great time. He met a lot of really cool people, and came home with a plethora of actually useful information. One of the presenters says he is a great candidate for a home dialysis unit that is small and portable. Like, travel-portable. She said one of her guys has it, and he is always playing golf in Spain. So… Whoo Hoo! He was also able to talk to his dietician (who is part of the app team, as well) and now has some more information on how to manage some of his more worrisome levels. So, great news, all around.
And… it gets better. He decided, since he was already out and about, to swing by the ward and get his blood drawn. After our disastrous day Monday, the hospital called late that night and confirmed what we had suspected. His levels suck, but they are not “freak out in the hallways” bad. There are some numbers that are more worrisome than others, though, and they can fluctuate pretty quickly either way. They want him to go in twice a week to get blood work, until they figure out what to do for him regarding dialysis and his fistula.
One thing that may be an option is to tie off some blood vessels near the fistula to “force” it to mature faster. We should hear on that in the next day or so. Also, he is waiting to hear what they want to do, regarding the catheter.
So we had decided that we would go in again on Thursday (tomorrow). But, since he was out anyway, and feeling pretty good, he decided to go in after the conference today. That frees up our day tomorrow, which is nice, but I did have mixed feelings about not being there. I hate the place, honestly. After what I have seen and heard, I would really rather never set foot in there again. But on the other hand, if Henning has to be there, then of course I will go. But whatever. He went.
He ran into this nurse (a man this time) who was VERY helpful. I say ran into, because Henning reported that again, there was no one at the desk. I would have been more surprised if there had been. The nurse, Steffan, read through Henning’s chart, and even though they didn’t do the blood work there (the person who called us the other night gave us bad info – SHOCKING), he would arrange to have it done tonight, and did so. The mood was very light and easy. I want to be really chauvinistic and say it was because they were both guys. I think there is something in that same gender gathering, which makes things more comfortable, sometimes. But that was not the case tonight.
There was another nurse there in on all of it, the one who did the scan on Friday. She is also very open and communicative, with a great personality. She was one of the nurses who had tried to arrange for us to talk to the doc on Monday, and had pressed the case for the catheter. She was actually pretty disappointed in the way things ended up turning out.
In any case, they gave Henning a TON of information, AND gave him direct numbers to call to get answers for the questions they couldn’t answer. So it was a great experience. It was like Friday, without the needles.
So, why am I still upset? It is because basic patient care shouldn’t depend on WHO Is on staff at any given moment. Receiving good care should not depend on shift, personality or mood. It shouldn’t depend on how “with it” the patient is, or how able they are to manage their own care and ask the right questions. Good care should be a basic right. Any patient should be able to expect good care, hygienic surroundings, and complete information regarding their treatment, and at the same time expect to be treated with dignity and respect. That should be the MINIMUM standard of care.