A Date and Disappointment…

Written by Scott

Topics: Archives, Faith, Family

major facepalm

Yesterday we had our initial consult at UW Medical Center in Seattle, which consisted of an ultrasound (they require their own, and apparently aren’t on the same system as Franciscan in Tacoma, so they get the reports, but can’t view the images…necessitating the ultrasound the verify the information in the reports).

Regardless, it turned out to be a very long, very frustrating day for us.

But…we do (assuming we end up staying with UW for the birth, which at this point isn’t a guarantee) have a birthdate, and Evanna will make her grand entrance on October 3rd.

Now that we’ve covered that, let me tell you the story of the day and the frustrations it held. Actually, better than that…I’ll relay the verbatim story [typos and all] I emailed the patient relations team late last night at the suggestion of the social media team. That may seem confusing, but this should clear things up:

I’d vented about a (small) portion of today’s consult visit on twitter, and the UW Medicine replied to it, and then suggested it might be helpful to pass along. I apologize in advance for an possible typos…

But it might be helpful to relay the whole story, because there’s more to it than one piece and 140 characters.

Our soon-coming daughter has been diagnosed with spina bifida, Chiari II malformation, and bilateral clubfoot. As such, we’ve been referred to Seattle Childrens for the after-birth care and surgeries…and they, of course, refer the births themselves to UW Medical. So that pretty much catches us up.

Today’s appointment was scheduled a couple weeks ago or so, because we hadn’t heard from anyone and needed, if nothing else, to get a date for birth so that we can figure out care for our other children, find coverage for my work, since I’m self-employed…things like that. When it was scheduled, my wife was told that the gap between UW’s ultrasound and the consult was to allow the doctor to review the report and images.

That about catches up to today.

Let’s start first with the ultrasound. Having had multiple ultrasounds and prenatal echocardiograms, we’ve gotten used to the drill. This one seemed rushed, and the measurements seemed almost haphazard, with two crucial ones (bpd and hc) were done multiple times with the converted age being up to 3 weeks difference among those results. So we didn’t exactly have a lot of confidence with the ultrasound itself.

Then, once done, the tech left to review them and would be back in a few minutes to either let us go or retake what was needed. We waited more than 15 minutes with no contact, and it wasn’t until my wife went out to ask (and to use the restroom), and mentioned to a staff person…who then checked with the tech, who was on the phone.

So we finally were able to go, went downstairs to the cafeteria to grab some lunch before the next appointment. Came back up, checked in, and were taken back to the exam room fairly quickly. And here’s where the frustration really started. This is the room:

room 1

room 2

So in my frustration with feeling like an uncared-for sardine, I posted to twitter about it. And just like the old infomercials….but wait, there’s more!

We were told they were running a few minutes behind. We waited, in the sardine room, with NO CONTACT BY ANYONE, for over an hour past our appointment time.

By then my wife again needed a restroom, and went out from the room, and asked a staff person where one was. The reply was this…which struck me as so odd I had to post about it as well (on FB, though): “are you a patient of ours?”. I was just floored to hear that. Had I thought about it at the time, I would have stuck my head out and answered that we were wondering the same thing!

She also mentioned the wait to the staff person, and after a few minutes Dr. Delaney came in. She’d been reviewing the report and images (which contradicted what my wife was told by the scheduler). While we got much of the information we needed, the discussions regarding studies of vaginal vs caesarian with spina bifida babies seemed dismissive to us.

While I understand the convenience of Seattle Children’s using UW for the births, after today we’re not sure that convenience is worth what we feel is the lack of care.

That’s the story. I know in letters or emails like this the suggestion is to always offer perspective on possible resolution. But frankly, amid all the other stress we’re dealing with, and with how frustrating today’s visit was, I don’t have the energy to think of that. But I will end with this: in the exam room, there was the little sign titled “Patients Are First”…well, if we were first, I’d hate to see what the list actually was for, because it did not seem it was for care or consideration.

So there you have it.

This morning the UW Medicine twitter account person tweeted that they’d checked, and the patient relations folks had received the email and that they’d be in touch soon. As a possible extension of yesterday…no contact thus far.

In the meantime, we’re looking at other options…


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