Sunday, January 18, 2009

Back Home


We got back home last night, after a fairly harrowing trip across the mountains in the dark -- with good weather, luckily -- after delays in oxygen acquisition made us late in starting out. Dad was very confused last night (although, as my sister said, anyone would be after what he's gone through), but felt much better this morning. He was a little confused again tonight, though. Not sure if that's sundowning, or what.

In any case, the procedure went well from a technical standpoint. The doctors were very happy, and certainly Dad's peppiness today bears out what they've said about the benefits of the valvuloplasty. We don't know how long those will last, of course, but at least theoretically, he can have it done again. In the meantime, we're scheduled for a follow-up visit to Stanford in mid-February.

It's still far from clear how well he'll be able to manage on his own. For instance, he has appointments at the VA this Thursday, and ideally could take the Access bus, but I have to teach him how to switch oxygen tanks, and given his terrible vision, I'm not at all sure he'll be able to read the dials. This is worrisome, to put it mildly.

I'm astonished by how difficult it is to get oxygen. The company that brought the concentrator to our hotel room wouldn't let us swap our empty tanks (from another company) for their full ones. We couldn't get new tanks, or get our old ones refilled, at the hospital. The caseworker, who clearly had never dealt with this situation before -- "I'm making this up as I go along," she kept telling me -- found a Silicon Valley company that also has an office in Reno, and they brought us two tanks which I'll return to their Reno location tomorrow or Tuesday. Meanwhile, I'm trying to arrange to get a portable concentrator for the February trip, although those only run three hours on batteries, so I'll have to figure out how to plug the thing into my car (which doesn't appear to have a cigarette lighter). At least that way, though, we won't have to switch tanks.

I've come to loathe oxygen tanks.

Also, although we like the people connected with Dad's study very much, we were in other respects decidedly underwhelmed by Stanford, which has to be one of the least organized places I've ever seen. On Friday, we were sent to three different waiting rooms, dragging Dad's personal wheelchair along with us, to wait for his transfer to a room after his procedure. First we were told he'd be going back to his old room. Then the nurses on his old unit sent us to another unit (which, it turns out, doesn't exist; since they work in the same building, you'd think they'd know that). Then we were given the correct version of the new unit, and waited there for an hour or two before finally being told that no, Dad was going back to his old room after all. So we trooped up there, only to discover that no, he was actually going to the unit where we'd just been waiting.

During this saga, we worked on our hospital-as-airport analogy. Aside from the driveway with drop-offs and pick-ups, there are lots of other similarities: the tile-and-glass decorating scheme, the fact that everything inside is overpriced, the fact that you have to schlep any valuable belongings of the patient ("Please do not leave luggage unattended"), the fact that you wait in small, crowded waiting rooms, much like airport gate areas, and periodically have to haul everything somewhere else ("Attention passengers on Flight Dad: your gate area has changed. Please collect your belongings and proceed to Gate WTF"), and, in the case of Stanford -- which evidently hasn't heard that the latest rage at hospitals is private rooms -- the fact that the rooms feel about as crowded as your average airplane cabin.

Also, the volunteer working the surgery waiting room came over as we were wolfing down sandwiches (we were hungry, but didn't want to miss news by going somewhere else) and told us that we weren't allowed to eat there. My mouth was full, so I just looked at her. It must have been quite a look, because she backed right off and said, "Never mind. Go ahead and finish."

Also, only once during our many hours at the hospital did I step into a restroom that was clean, rather than strewn with used paper towels.

And then there was the fact that Dad's nurses, although very pleasant, seemed clueless about why he was there. His nurse in the first unit kept talking about his new valve, until I said, "He didn't get a new valve. He's here for valvuloplasty." (Way to rub in the fact that he's in the control group, lady!) The nurse discharging him from the second unit kept talking about his stent and handing him stent instructions, until I said, "He didn't get a stent. He had valvuloplasty," at which point she snatched back the stent info and said brightly, "Oh, that's right! The guy in the other bed was the one who got a stent!"

None of this inspired confidence. I've gotten better service at all of our Reno hospitals, even though they aren't world-renowned academic facilities. But, as I say, the doctors and nurse connected to the study were excellent, very helpful and friendly and hyper-competent. I guess that's the most important thing. I sure hope, though, that the benefits of the valvuloplasty last a long time, because none of us want to go through that experience again anytime soon.

3 comments:

  1. Wow, Susan! Your tolerance for idiodicy is much higher than mine. I've have snapped after the 3rd trip to a different room for your Dad. As valuable as they are, teaching hospitals do seem to be chaotic in many areas and less than immediate in their knowledge and processes. Such was my experience at a VA teaching hospital. I'm glad your trip both ways was safe, even though scary and stressful. I'd have been scared too going through mountains in the dark. Prayers ascending that the new energy level your Dad is exhibiting remains and improves all his functioning over time, that you get all your oxygen bottle problems solved, and that the next trip is an improvement over this one.

    Hugs!
    Lee

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  2. Anonymous10:42 AM

    My patience for incompetence is quite high, as you deal with it everywhere these days. But it scares me when a health facility is as disorganized as you described. That ain't some guy at McDonald's screwing up your order!

    Jeff P.

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  3. Well, Susan, I've observed myself that being in the hospital is like foreign travel; but the airport analogy works, too.

    I'm also sorry you and your Dad had the experience of chaos and confusion. We can get torn in that circumstance between being frightened that important things might get missed, and angry that they might get missed because of "this nonsense!"

    Perhaps you might get the study nurse to be sort of an ombudsman for your father when he has to be there. Blessings.

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