As a parent to sick kids I think an important, even vital part of our relationship as caregiver/patient is for them to see me advocate for them .

There aren’t many times when I’ve lost my temper, but if I do it’s usually for a good reason (at least it is to me and my kids). I can think back to the time that Gage was in so much pain he couldn’t stand, sit, or move his neck (catheter #2) and the surgeons nor his dialysis doctor were addressing my concerns about his pain, the time Quinnlin had 3 ultrasounds for the same test for her transplant evaluation and the last one resulted in her missing a day of school and me a day of work. There are also the many times that our time isn’t counted as valued. An example is when the clinic won’t/can’t order infusion meds until the IV is actually IN the arm – when it makes sense to order the med when we check in instead of the hour or sometimes later than an hour, as such was the case last Thrusday.

I’m fine with the kids seeing me upset when it’s appropriate, in fact, I think it’s a learning tool for them for when they are their own advocates. It’s just the truth, but health care people just don’t see what we see and they can’t know how it feels from our perspective – whatever it is.

If I’m to teach them the regular things about caring for themselves by being an advocate – even an upset one – is part of the package. I want them to grow up to take care of their kidneys, handle their meds, listen to their bodies (hence the E.R. visits when the kids ask to go) and to be inquisitive about what is happening with treatments and tests. The only way I know how to do that is by example.

So today, when I call the patient advocate, I don’t really have to. But I have to. It’s my responsibility to my kids and for other kids. They deserve the best care AND the best customer service that the health care community can offer. Would I rather not? Of course, I have other things to do, just like every other parent on a Monday, but I want to be able to tell Quinn that I am trying to make the impact of her treatment less of an impact on her already impacted life. When we go in next month I want it to be different for her and I want her to know that I did that and she can, too.

The problem with this is that you always feel like you are complaining, which can be quite the reputation to have when you work with people every week. I strive to show respect for the people and frustration for the process. There’s a distinct different. The people who are ordering the meds or putting the IVs in aren’t the ones that make the policies, they are just the facilitators. It’s the hospital policies that are usually in question, or the “way we’ve always done” mentality.

All I want to do is just to change some of the way they’ve always done it and when Gage and Quinn are older I hope they will do the same.

Quinn has always known she had “bad kidneys.” Ever since ever we’ve been talking about how one day she’d need a kidney transplant, how she has to take a lot of medicine and how little kidney function would/does impact her day-to-day life.

We always spoken to her on her level, trying to let her be a little girl without the weight of failing kidneys on her shoulders, but also hoping she would gain an appreciation for a new kidney when the time came. I think we have always been realistic of the kid’s understanding…that probably goes to our trying to give them some normalcy to it all and not have too many highs or lows emotionally when dealing with their challenges. We’re trying always to make them feel normal, within our world of abnormal.

So Quinn, has always known things about her are different. Most of the time she’s fine with being different but every once in a while she’ll say something about how her friend are able to do this or do that.

Last Friday we had a snow day and a neighbor girl came over to play. Age-wise she’s smack dab in between the kids and can play with either, which speaks to her ability to do a lot of things well – she’s flexible to be interested in Quinn’s likes and yet also Gage’s likes, which are completely different likes. She’s a charmer of a girl and both the kids enjoy spending time with her.

While I was home (no driving on ice for this southern girl) watching Quinn and this girl interact I was a little awestruck. I just all of a sudden noticed how much she was engaged in the play. She’s really playing fast now. By fast I mean she is keeping up with the play – whatever it is – which wasn’t her typical speed. She just moved (moves) slower than other kids her age (and sometimes kids younger than her) because she has special needs. Of the developmental kind.

Kidney failure is a slow-moving disease for which sometimes the symptoms creep up on you unnoticed. Not like debilitating itchiness or back pain, or lack of restful sleep, but like concentration and patience and follow-through. She did do most things, but just slower. Play, school, chores. She always needed help to keep up or we needed to slow down…last to finish everything.

I’m not the only one who has noticed. Her special ed teacher said he noticed something similar. That she was just doing better after the holiday break. Even her writing has improved; from wonky to straight letters, straight across the page with no lines. It’s like 3 months after transplant the light bulb just turned on, or at least the brain cells are getting enough blood with a working kidney and her body is getting rid of toxins instead of hoarding.

A new kidney means kidney function, which takes care of her body. And to those around her that want her off of dialysis and alive, it is amazing. But kidney function to the little girl? Energy to play, brain cells to learn, and the ability to use those things to build friendships and memories.

That’s what kidney function means to Quinny B.

Cheryl,

I know, lucky, right? I get to use kind of the same theme as two days ago on Jody’s post except there are 30 months before it.

Can you believe it’s been 3 months? I can’t. Each day while getting us all used to post-transplant follow up was long but the 3 months flew by. How does that happen?

Quinn(lin) is doing fabulously, as you know. The kidney, like I said before, can be a little temperamental (she likes her water) but all and all she is happy with Quinn.

Quinn feels fantastic! She is sleeping better than she has in years. She isn’t itchy, she can concentrate at school, she can play an entire day without rest and her personality seems to be blossoming. She’s actually quite engaging now that she has kidney function. I think I just thought she was more laid back. One of her therapists said the same thing about Quinn.

Her skin color is back. She’s growing again. She’s feeling better so she is happier. That is about as much as we could ask for, right? We are so lucky and so blessed to have you and your family in our lives. Not only because you gave my girl a kidney but because all along you and Steve have been huge supporters. We so appreciate that you two are two of the first to have enough faith Quinn and Gage would one day get the kidney transplants they so badly needed. Thank you for that because you have no idea how desperate we were for someone how loved us to believe.

Thanks for waiting for 3 years to donate a kidney to her and for your remaining steadfast in your belief if would happen.

We love you and your nearly always behaving kidney, too,

Julia, Quinn’s proud and grateful mom

A dancing girl.

With energy.

Energy to play an entire day without stopping, except to drink water

and yell  “I LOVE THIS DAY SO MUCH!”

The girl who used to be itchy and sad about that, she had sunken eyes,

we call her Quinn.

Quinnlin. Quinny B. QB. Smart. Strong. Beautiful.

Most days I can suck it up and get through it but today for some reason many things related to caring for Gage and Quinn are annoying me greatly. It’s the stuff that is connected to them being sick kids. Here is a list, but in no particular of the level of annoyance.

- Pharmacies. I’ve made no less than 7 calls about the SAME prescription. The doctor says she called it in. The pharmacy says she didn’t. Of course, she is OUT today.

- Pharmacies, Chapter 2. We have some 20+ medications to refill. They are mostly on different days (no matter how hard we try to get them on the same refill days, it never works) and have different number of refills left. So please, person, don’t get snippy with me when I’ve let a refill slip to ZERO, help me get a new one.

- BCBS is making me use Precision mail order pharmacy. I’ve not had a good experience there, I’m sure someone has, but I would not be that person. One of the drugs that Quinn needs is a liquid (she’s too little to take the first mg pill they offer) and instead of the 3 month supply of pills I can get (making the times I have to talk with them lower) we have to order it monthly about 5-7 days ahead, if we would, you know, to make it easier on them.

- Lab draws – Quinn still needs labs twice a week. She only needs to go to be seen in clinic every two weeks so on the off week we go to a local lab with standing orders. But she wants to go to another lab close by (same company) because A) We’ve seen some roaches. B) There is one woman there who very possibly HATES her job more than anyone I know and Quinn has noticed that. Last week she said, “She is not a happy person.” But the company (lab to lab for THE SAME COMPANY) doesn’t share standing orders. So I had to get another form and scan it and email it to the transplant team (I swear Kerrie, you ROCK!) to fill it out AGAIN, meanwhile we missed labs yesterday and today making them once this week. Bad mom.

-Traveling with sick kids. We will be going out of town and Quinn needs those labs but BCBS wanted me to pay out of pocket for the labs (4x, $400-600/pop) and then appeal that they will not pay for regular labs out of town. So I called our very capable (no longer on our case) case manager who just called me with the authorization code to do them and have them billed. She, too, saw the ridiculousness in the situation because you know, it’s to MONITOR A FRESHLY TRANSPLANTED kidney they recently paid $175,000 to do. But whatever. Amber ROCKS as well and after several calls, new forms from the transplant team, 3 calls to the lab 20 miles away from said vacation location we are set. I think.

- Traveling with sick kids, 2 – trying to make sure we will have all drugs in our possession when we leave. Yeah. Not going to happen. FedEx anyone? That will not go well. I can for sure predict that I will be spending some time out of town tracking back a package, pleading with the customer service person that there are kidney-saving drugs on board a truck somewhere.

- Filing for services. Period. Too much paperwork, wait times are unbelievable. Medicaid and Medicare. Which I need to do, but I swear I cannot focus on it until next year.

- Management of a lot of people – the people who manage the kids for school and health, well, there are a lot of people. They manage their education and their kidney function. But you know what? They don’t just do that on their own. I manage them. When I’m working out a situation (like refills, testing, etc.) rarely do I get to talk to the person that handles it. There’s a lot of people in between me and the managers. It gets old.

- Forcing stuff – Quinn is having FITS about one of her meds. She takes pills with ease, and has since before she was 4, but nasty tasting liquids? Lately it’s been a battle. Taking this med is non-negotiable. That doesn’t always bring out the patient, child-adoring mother in me. While we’re talking about non-negotiables let’s talk lab draws. She is tired of labs draws. Twice a week, 3 sometimes. There are screams and they are loud. Throw in an IV infusion to the mix and there is a lot of forcing and holding down the child on my part. I want to be patient, but again? The patient, child-adoring mother doesn’t always have an hour to cajole, in fact, we never do. And that really sucks for her. And when I let myself think about how that sucks for her, I cry.

The relentlessness of the above list makes me sad. Because it never ends. Literally. Never. Ends. Next month I’ll be annoyed about the same things but hopefully not all at once. The thing about it is, I would do anything for the kids to be well and well-adjusted but there are so many strikes against them that it feels like we are always pulling ourselves uphill.

But I guess that is another post entirely.

(give videos a second to upload)

PKD and the PKD Foundation has had a lot of press because of Quinn’s story.  We’re delighted about that. Here’s how it all went down.

Last December Quinn wrote this Dear Santa letter at school and I posted it after it came home with dozens of other papers cleared out from her classroom. The PKD Foundation contacted me with the bright idea to send out a PR news wire story about it to see if any local media would like an interview. I think the it hit the Internet roughly a day before Christmas Eve last year.

Self-proclaimed “Backpack Reporter” Julie Wolfe from local station WXIA/NBC affiliate called and arranged an interview on Christmas Eve around 4 or 5:00. Luckily we were pretty low key that night and my parents were joining us for dinner. We said okay.

This story ran last Christmas Eve. We heard that it was picked up by CNN and it was played for the next week in around the country. A few friends from several states saw it.

Around June, when it looked like our donor would be approved and we would start scheduling I contacted Julie through the station’s website and asked her if she would be interested in a follow up story. So when the time was closer we talked about what footage she wanted to get.

I’d had some problems with clearance from the donor hospital (they were very unreasonable) trying to get filming done for Gage’s story. And Children’s was wrapped up in that drama, so I didn’t feel comfortable with hospital footage but our Child Life Specialist made an introduction for me to Meg at Children’s Healthcare and I felt comfortable with her (actually she was fantastic!), so I allowed Julie Wolfe to film at the hospital. Then Meg wondered if Julie might want O.R. footage and the surgeons agreed to it and that was that. Filming started on the Friday before transplant at our house with us, Cheryl and Steve and Quinn. Julie also got clearance from the school/district and filmed Quinn’s happy kidney day celebration (sadly that footage never made it in the story!). Monday night Meg spent the evening with us as we celebrated Quinn’s birthday (with about 15 people…spectacle!)  in the cafeteria (no lighting of the candles and Quinn said, “Does that mean my wish won’t come true?). She followed us to our room where we tried to settle Quinn in for the day. Julie got the footage of Quinn’s labs being drawn. Then we met up early and she was with us for the day – from wheeling Quinn to surgery, footage of the tunnel/cooler trip for the kidney, in surgery and the infamous bad and good kidneys next to each other. Julie and I tweeted and text messaged each other all morning as things were progressing. Between her, a nurse who called and Julie’s live tweets, Cheryl’s husband’s calls and tweets, we knew what was going on the entire time. Amazingly enough, even all that going on couldn’t calm me or distract me – I was scared.

The following Friday, this story aired locally.

As Julie Wolfe busted out of the O.R. on a Good Kidney High she told me she’d received an email from the Today Show asking to have contact with us – they’d seen the teasers on the website. Before that last sobbing interview with me she contacted the Today Show and I spoke with them on the phone. They wanted an “exclusive” of the story and from there we worked out a time line with the local NBC field office producer.We were preempted a couple of times but here is the final Today Show story (minus the chit-chat at the end where they mentioned the PKD Foundation).

The story ran the day after Thanksgiving and is scheduled to run Christmas morning. It landed on the AOL News page, then Good News Now picked it up and linked the PKD Foundation, this blog and the story on WXIA. I had thousands of hits for a couple of days and it was great PKD awareness.

Last week we learned that our local paper wanted to do a cover story on Quinn so they came out last week, took a photo and interviewed us. It is supposed to run tomorrow.

And that my friends, is how the media story unfolded (and keeps unfolding).

Julie Wolfe was amazing to work with on this. Professional, friendly, charming, happy, just a dream to work with. We shared some moments and “the” moment when she was interviewing me 10 minutes after the surgery. We locked eyes for a moment and shared an understanding that I can’t explain. You are a part of our family(I know, it’s weird, right?) because you shared all of it with us. Thanks Julie, for seeing Quinn’s story and helping us share it! The PKD Foundation thanks you, too.

Let this be a lesson from Quinnlin.

Post-Transplant, Pre-Bath

Post-Transplant, Post-IV

Saturday we get to take the kids to a holiday party for kids who’ve received organ transplants through Children’s Healthcare of Atlanta. This year Quinn gets to be an “invited” guest instead of a guest of the “invited” Gage. I’m awfully excited to have something to do that will be fun (if Gage will allow himself to have fun), I’m glad it’s free and I’m glad it’s nearby. All perks.

Ah, the perks of being a kid with special needs. Sometimes we feel weird to accept these perks. The Make-A-Wish trip/s, the gifts, the attention, and extra parties just for kids who’ve survived being really sick.

Nearly 3 years ago when our most fabulous Child Life Specialist Ginger had a talk with me about my reluctance to accept Gage being recommended for a wish she gently changed my mind. She told me firmly but gently it wasn’t for me to decide really, because Gage had the opportunity to do something special, and who was I to deny it. I remember that discussion whenever we get invites to special events, or the kids receive special gifts – all because they have a disease.

I think about how I’m happy they have the chance to do extra things that we wouldn’t normally do and I’m happy for them to feel singled out to do something many other kids don’t get to do. Like attend summer camp with kids just like them, attend parades and sit in special seating, or to meet a Braves player, or maybe see Santa and decorate cookies and do arts and crafts with kids they may know from the only camp they are allowed to attend. It’s kind of cool for them to have something special.

I think accepting that first nomination for Gage’s wish to be granted was hard because it was further evidence that we were drastically different than our peers. That the kids were extraordinarily different than other kids to be in a position to get these special opportunities. But I don’t think that anymore. I’m grateful for the time we can spend doing something different. I’m thankful for the extra treats they receive. And somewhere in the back of my mind I am thinking that I really have to take these special moments in because their lives are fragile. We never know when or if their bodies will reject a kidney. We never know when they’ll be hospitalized for an infection because they are health compromised little ones. I never know what is around the corner.

And that includes the good stuff, too. I never know what event nice people have waiting for my kids. I never know who might give them a gift just because. I never know how much fun they my have at the planning and expense of someone else.

So we’re going Saturday to a party not many other kids get to go to and I’m going to be having fun watching my kids having fun.

Cheryl,

Two months already? Well, I’m just saying that because that is what people say, but really, it feels every bit of two months.

Your kidney is working fabulously. It’s a persnickity thing though – really likes water. Thank goodness your kidney went to Quinn because she loves the h2o. We are so very lucky indeed.

I’m still a little stunned it all went so well. I’d worked myself up into a tizzy that since Gage’s kidney transplant went so smooth that we would have problems with Quinn’s new kidney. I think it’s just the coping mechanisim for me – expect the worst and be excited when it works.

Thank you for your kidney. For the risk you faced while offering a the chance for Quinny B. to live off dialysis. Having survived dialysis with Gage I know the impact Quinn would have faced. While I am sure she will need dialysis some time during her life to survive, but I am very grateful she doesn’t face it right now, while she is 8 and in 2nd grade.

Today, she played dolls, stayed in her PJs nearly all day, she ate anything she wanted (the formerly restricted banana!) and played made up games with Gage. She didn’t have to leave for dialysis or stop what she was doing to get hooked up to a machine live. I’m eternally grateful for her ability to just live.

Love you and your gently used, mostly behaving kidney,

Quinnlin’s Momma

I have so many thank yous to write. And if I didn’t have Quinn’s 2 months past due birthday party on Sunday they might be going in the mail. In fact, they might be addressed. And written. But sadly they are not.

It stresses me out to know that my thank you notes aren’t done. Ever since ever I’ve written thank you notes. I wrote one the day after I met Julian’s parents for the first time, for goodness sakes! IT’S WHAT I DO.

There will be some of you that tell me DO NOT SEND ONE, but I will anyway so get over it. If I don’t send one, then your gift or good deed did not end up on my list. And trust me, you want this thank you note. It’s specially made and marks the transplant occasion perfectly. So you must tell me in a month if you haven’t received it!

We’ve been eating the some 30 prepared dinners bestowed upon us and I’ve just ordered our Thanksgiving dinner with the credit leftover compliments of four people who made donations. Two of them are blog readers and I do not know them personally. People have also dropped off goodies, handmade freezer meals, gift cards for food and treats for the kids and yet, they’ve gone un-thanked too. But please know how much we’ve appreciated every morsel. The food has feed the bodies that take care of the babes that need us and they’ve feed our souls because of the love you have shown us.

This weekend we will enjoy delivery of two more meals from another fresh meal deliver company (from 5 people) and I cannot tell you how helpful that is because we are barely getting by on time with the Walk for PKD (last Sunday) on the heels of Quinn’s transplant. I wasn’t prepared for how difficult it would be to reenter society AND take care of the family’s every need. It is taking (me) longer than hoped for to get back to our normal. A lot longer.

So know, that even though the special-just-for-you card isn’t in your hot little hands that we appreciate it. We’ve appreciated it all.

On Monday I brought both kids in for a clinic visit. It’s typically not a long appointment. Enough for a transplant coordinator to go over meds, the doctor to take a quick look, and enough time for you to ask questions. Quinn needed an IV for an infusion for the med Zenapax (part of no steroid protocol) and so we were there a little longer.

We’d done Gage’s labs locally on Friday and learned his creatinine and BUN are steady. Which is amazing to me because I know for SURE he doesn’t get enough fluids. But that kidney – Jody’s kidney – is not persnickety at all, which pleases me greatly, because as you know, making Gage do anything extra that we want him to do, is…how shall we say? A CHALLENGE. Quinn’s kidney – formerly known as Cheryl’s kidney – likes some fluids. Luckily Quinn is a drinking fool usually, so while we’ve had a little bit of trouble with dehydration, it’s been rectified the few times its happened with pumping water.

Gage has to go every 3 months for clinic. Quinn is still on once a week for clinic and blood work twice. Gage only needs labs every other month. Six times a year. Yay for Gage! So, less visits for now unless otherwise indicated.

So, we still all have kidney function. All four of us. Five of us if you include Lucy.