When the liver team set this ultrasound up for Quinn we took the first appointment they gave us. We always take the one they give us because we have to assume that is first available. I rarely, if ever, will say no to a given appointment based on my schedule, but sometimes will based on the kids’ schedule at school and/or extra activities. The liver team needed this ultrasound because, apparently, one of the other two ultrasounds didn’t have the tests they needed. This was our third appointment. I’d taken it, already stunned a little bit honestly that they hadn’t gotten their act together considering Quinn had been through this 2 times already.

Like I said, I took the appointment they gave us, 11:00 this morning. It meant Quinn wouldn’t go to school and it meant I would be out of the office for the day. In addition to this appointment they scheduled a liver doc appointment at the end of the month – first available – and also because the ultrasound wasn’t until today knowing we’d need to discuss the findings of today’s results at the doc appointment.

Quinn couldn’t eat or drink (except to take her BP meds) so Miss Quinn was not all that pleased that the KITCHEN WAS SOMETHING LIKE 10 FEET AWAY FROM HER ALL MORNING WITH “FOOD RIGHT THERE” SHE COULD EAT IF MOMMY WOULD JUST LET HER, “GOSH ALREADY! MOMMY.”

I’d really gotten over my annoyance at the third ultrasound requirement because this is the system we are in and the process is this, and Quinn is really just a number with a checklist (that is not in fact a real, live working checklist, mind you) of items that have to be done in order for her to be considered for transplant. For Quinn, she needed extra clearance from liver and dermatology because of the suspicious mole on her back.

Imagine my surprise (and utter disbelief) when the ultrasound tech ask me if she knew what the liver docs were wanting that they didn’t see on the first round of tests they did for their department. What’s that you say? You have those? Yes, and they were taken two weeks ago at the first ultrasound appointment so, like magic, they were there all the time, apparently they just needed to click their heels to see them. There was some waiting involved because the U/S department wanted to talk with the liver department to confirm and it turns out the liver team didn’t know they were done, blah, blah, blah.

I cried. Quinn got worried. I told her as I grabbed her checks and we rubbed noses that I was mad and crying because I was upset…her time is important and she should be at school learning and I should be at work earning money but we weren’t at those places because people keep making mistakes. And I said I was sorry that she missed a day learning and with her friends. I said she deserved better.

In all fairness, this had nothing to do with the radiology department but they had to deal with me. I said, “I know it’s not you and this has nothing to do with you, but I’m pissed. This is our time and it’s important and this is a waste of time for a family that is already so challenged, and this is such a waste of time – Quinn out of school and me out of work…”

He stalked us because we were going to lunch, where he bought us lunch (seriously, he did) to help make it up to us. As if. While on the way and I’m still crying a little bit, we ran into the one of the transplant coordinators who said, bad news, Quinn’s GFR isn’t low enough to for sure be in insurance guidelines to warrant a transplant, so she might be rejected the approval for a transplant. There is some chance that Gage’s disease progression and Quinn’s symptomatic problems would qualify as enough reason/s to approve her, but we have to wait and see if we will need to appeal it or not.

(As provided for by the National Kidney Foundation – Glomerular filtration rate (GFR) is the best overall index of kidney function. Normal GFR varies according to age, sex, and body size, and declines with age. NKF’s KDOQI clinical practice guidelines recommend the MDRD Study equation to estimate GFR. Quinn’s GFR is 30 and 20 is the standard for transplant approval with insurance.)

In the hallway the coordinator also mentioned that we still need dermatology clearance because of the mole (dermatologist said to get it off before transplant). So I came up with this lame idea to take her in with Gage during his afternoon appointment to see if they would have mercy on us and remove the mole. It is a lame idea because Quinn is very sensitive right now to needles and scalpels and she didn’t take kindly to the needles and scalpels being used on her. So when we got home I called the dermatology office and guess what? The agreed to have Quinn come in too since we were at the end of the day. So, no longer would Daddy be able to take Gage (it was now minor to major visit and mom goes on all of those).

I tried to make a Board conference call for the PKD Foundation but it wasn’t to be. I had to drop off 20 minutes into it. Oh well, something must give, right?

Anyway, nearly 2 hours later and much drama that included me wrapping her up like a Burrito in the blanket I brought, bribery that involved the promise of tricks with nitrogen (?), and a lot of “This is a stupid, baby, butthead place!” the mole was in a jar and 3 stitches were in place of it. So it goes to pathology and hopefully it is benign.

This all speaks to the nature that while this is the 2nd transplant for our family nothing is routine. Transplant #2 looks nothing like Transplant #1. I’m a different person this time around. I believe more things can go wrong because they can. I know that if Quinn’s kidney function deteriorates fast like Gage there is a window of time in which we have to get her transplanted before the need for dialysis. This window will likely only include the time to test one donor only – QPD#1. And then to dialysis she will go.

My need for voicing (writing) this is the reminder that continued advocacy isn’t for nothing. I’m Quinn’s only voice.