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.

We hold Quinn close to our breast

We watch her close up and far away

Like the cool mornings of an autumn which goes on and on and on

Her spirit revives us each time we see her

Like the crystal blue sky of an autumn day in December

Her eyes capture our attention

Like the thousands of stars above us on an autumn night in December

Her influence on her world is great

Prayers from Alpharetta, from Tennessee, from New York, from Florida and from “God knows where”

Like the certain coming of winter

The medical books tell us there will be bitter cold days ahead

Seeing the pansies frozen and shriveled

We fear her life may pass too quickly

Medicine which stops working, dialysis and transplant

We simply say the words and chills run through us

To think of her fate on this autumn night in December

Is to bring on winter with its cold dark rainy days

But then there is the promise of springtime

The hope for a warmer day to come

The beauty of God’s work in re-creation

The miracles of modern science

The miracles of faith and love

We hold Quinn close to our breast…

Written by Steve, father to Glori and Geren,  husband to Cheryl, Quinn’s kidney donor, friend, minister, when Quinn was three months old.

Quinnlin and Gage attend a fantastic (public) school. I’ve talk in the past about how they have supported the kid’s special needs including medical along with the educational. My kids have an abundance of needs in both areas, as you might imagine.

This flows down from the administration to the PTA. They support families in needs and kids in need. And they were delighted to support Quinn throughout her transplant and recovery.

Her class (Gage had the same teacher that Quinnlin has, which is no coincidence) had a pre-transplant send off party that included the opportunity for me to come in and read a book about kidney transplants and gave the kids in her class a chance to ask questions. Which they did with much enthusiasm.

The entire school was asked to wear Quinnlin’s favorite color. They painted messages of encouragement on the windows that welcomed her the last day she attended before her transplant. They said they loved her. Wished her good luck. High-fived her down the hall.

Many of the teachers encouraged the kids in the classes to write notes and draw pictures. She has over 200 well-wishes from kids and adults from the school. Each week during her recovery she received a bag of little gifts and games and more letters of Miss You and Love You and Come Back to Us Soon and We Hope Your New Kidney Works Great!

Monday morning Quinn was welcomed by a fence sign and the marquee with her name. Her class wore green and allowed Ginger, Quinn’s child life specialist to come speak to the class about helping Quinn stay healthy with the class’s help with hygiene. When she entered the class on Monday morning, she entered to hugs and screeching sounds of delighted 2nd graders.

We’re not the only ones who benefit from the atmosphere of acceptance. The kids get the benefit of learning how to support someone in need on a very basic, beautiful level that can’t be taught in a textbook. I’m proud to witness it and I hope that the lesson is far-reaching into the future.

But the thing is, for me, that it’s special to witness her community. Not the community that I’ve built to support our family through our journey but her support system.

It is indescribable how I feel about watching my daughter be accepted. Administration and teachers have set the tone of acceptance. And support and understanding. And Quinnlin felt all of it. She knew her friends and her school wanted her back and she felt happy about returning. She felt loved. Outside of her inner circle of family.

The spirit of community is alive in well and our family and most especially my children are direct recipients of kindness.

We had a scare today with Quinnlin’s creatinine again. It was for nothing though, because the labs from Thursday (that prompted Friday labs) were read as Friday. So we thought the creatinine was 1.1 two days in a row. It was not. It was a very respectable 0.6 and we were relieved.

Actually, when updating Cheryl on her kidney I wrote something about how I was having a hard time expressing the depth of my relief. That part is true. As true as Quinnlin’s very respectable kidney function.

I really try to NOT lose it when something like this happens because I have learned, something…always…happens. I’d spend all my time in crisis mode and do less living if I let every thing or potential thing rock my world before it’s time.

Good news is we get a reprieve. Quinnlin doesn’t need labs tomorrow and so just Thursday. We’re pushing the water over here in hopes of avoiding a repeat of last week. Really, could do without that this week.

Gage is also challenging (honestly, when is he not challenging?) because his behavior is so unpredictable. Each brings a surprise and it could mean it is a stressful evening or an okay evening. One never knows in this household. Living in it day to day can be like nearly always waiting for something major to happen.

We’ve consulted Gage’s old behaviorist who says we’re probably going in all the directions we need to at this point. He hopes that with Quinnlin back at school and us returning to normal (our normal anyway) that we might see things settle in the next couple of weeks. We can still use this doc for the oppositional behavior stuff (plenty of that) and we probably will. Also, for school, it probably wouldn’t hurt for all of us to get together for an overhaul. But I think it is pointless before we know if the kick up in anti-depressant is helping (it might be) or if the return to our routine will help. We really need to get Gage on board with it all, because THIS at age 13 will be hell.

Hey, you, Gage, WE ARE YOUR PARENTS. GET WITH THE PROGRAM.

Any program.

One thing I’ve learned is that if you can get a kid to draw when they can’t find the words then they might find it through pictures. So last week during her clinic visit when Quinnlin was really feeling frustrated at having to have IVs and lab draws, we decided to wait and give her some time. During that time at clinic I asked her to draw a picture of how she was feeling.

This pretty much sums up the last week.

It was just a day. Not a great day sure, but honestly, just a day in our life. To sum it up in many words…

- Woke early to straighten Gage’s hair for crazy hair day, shower and get Quinnlin to kidney clinic at 8:20. I got up at 6:15, which, if you know me even just a little, early wake up nudges from hubby are not well-received. It is also a slated infusion day at clinic because of the no steroid protocol that Q is on.

- We went through BP, height, weight, urine and moved to room for nurse visit, doc visit, child life visit and then IV placement. Two hours later we finally got the med (zenapax) from the pharmacy. Apparently they’d been called away for an emergency and there was one person and ours was in the queue. Two hours. Two! The nurse came in to apologize and I just told her that it was upsetting, because after all, I do my part to be there on time, every time. She told me they can’t order it until the IV is placed. I mentioned that the transplant team had gone to great lengths to tell us what time, when, where and how we need to be prepared for these infusions. I actually realize that it’s a good idea to make sure we are there before they order it. But why wait? As soon as I check in at 8:10 why not call down and get it. The nurse said, well, the IV isn’t place. I point out that she must know that we aren’t leaving before we get the infusion, right? So, we’re a sure thing. Anyway, I was upset because again about time. Time I could be working (hard to find these days), time Q could be doing something – anything – different. So the nurse called the patient advocate so I could share my story. I told her yeah, I know her department. You know, becuase I am not well known for keeping my mouth shut. And while they are at it, why don’t they offer the flu shot?

- So we got back home at LUNCH because Quinnlin did not want to go out to lunch. The girl just wanted to come home. At 1:00 my mom came to take care of Q while I picked up Gage at 1:30 from school to take him to an appointment (next to hospital I just got home from)  to treat the warts gone wild. Once Gage was immunosuppresed the warts took over a knew and are know on both arms. Back in March I think, he just was over treating them. We’d been several times to freeze them and well, we were barely making a dent. The freezing was painful for him and so we decided to treat them topically with a $100 medication that came in a small syringe – something like a tablespoon. But that was work. And he was ready to go back for treatment of some kind so I’d make this appointment nearly two months ago. They tried numbing the skin, which would have been great, except the laser treatment option that was given to us meant another 30 minute wait (on top of an hour to see the doc) because the laser machine needed to warm up. Fine. Sixty-three pulses later (which I understand is a pretty large number) and we left. Just in time for our next appointment.

- We wanted to consult Dr. KATB (Knows All Things Behavioral) because it’d had been a couple of years (I’d reached out to him while we were looking for help when Gage was first dx with PTSD in July 08, but been unable to connect) since we had seen him. Luckily Kathy who is always willing to show Gage a good time, met us at the doctor’s office and took Gage home with her so we could discuss Gage’s situation. Which we spent nearly an hour and 45 minutes doing.

- It was a lot to take in honestly. I mean, for him. He’s going to talk to Gage’s other psychologist and get a sense of what he’s doing and then well, he’ll call us back. I told him that was okay, just know that our family’s happiness depends on his ability. No pressure.

- While we were in the waiting room for this appointment I got a call that Quinnlin needs her labs check again because her creatinine is rising (1.1 for those keeping tabs). We are hopeful again it is dehydration. But we’ve been working on h2o and so this worries me.

- Quinn’s has her labs taken last Saturday, Monday, Tuesday procedure IV, Wednesday/off, Thursday labs and Friday labs. Poor thing.

It’s been quite a week. Not one I am fond of I have to tell you. If you follow on Twitter, you got first hand reports, on Facebook a few as well. Cause I am nothing if not sharing the love that is our life, no?

Cheryl,

We rocked the first month of Quinnlin’s use of your kidney, didn’t we? Except for this past weekend’s mild major freak out set back with not hydrating the kidney enough (sorry about that!) it’s been all good.

We’re kind of shocked it was a month ago actually. I am still believing that it was a couple of weeks ago and that Steve is still taking care of you with the peeling of the grapes and all. But I know you are back at work and we are slowly getting back to normal, as if that was ever possible in our case, I mean our normal, obviously.

Thanks so much for your donation of a kidney. I’m still a little shocked it all worked out so beautifully. That only happens every so often to us, you know? Things just don’t often go our way. I bet you would have like to know that last month, huh?

But all is well. You sailed through surgery and recovery (we hear your recovery is the envy of kidney donors everywhere) in a way that was so impressive, we’d put your other kidney on hold if we could. You know, for next time. I understand that Becca (Jody’s daughter) told Jody (Gage’s donor) that you really showed her up on that. That kind of made me spew diet coke.

I can’t thank you enough. Really. Seriously. And for my friend Leslie, literally. Can’t thank you enough. We love you, your family, and that awesome kidney. Quinnlin reports that it’s “big right there” and that she feels better and her pee concentrates. Not on anything school related, but she has better quality pee and less of it. Her kidney failure symptoms have all but disappeared. It truly is life-changing.

Happy 1 Month Kidneyversary,

We love you (and we’re quite fond of normal kidney function, too),

Julia

Well, there is no other news. Only regular news.

Gage is having good days and bad days. We have an appointment with his old behaviorist. It will be good to get his input. Gage is very complicated. Is the bad behavior all attention-seeking? Or is it outward manifestation of his inward feelings? PTSD? Depression? Anxiety? Bad parenting? All of the above?

Quinnlin has had a hard week. Saturday she had to have re-labs because of a bump in creatinine, Monday regular labs with prograf levels, Tuesday stent removal then a stop by the ped for a N1H1 flu shot, and Thursday transplant clinic with infusions.

I’ll ask again. Why doesn’t the transplant team offer flu shots at clinic – where all transplant patients go? Where they go many, many times.

It is so much harder this time around post transplant. With Gage so unstable and Quinnlin’s care one person can’t do it. So neither one of us parents is getting rest or work done. We are both half people. That only makes one person total and that is not enough for these kids. Maybe they won’t notice.

While I am at it…why can’t Gage use his smarts for good instead of evil?

That is all.

Quinn’s creatinine was 0.5 when she got out of the hospital. I got off the plane to a message telling me that Quinnlin needed to get labs that afternoon or in the morning because her creatinine had increased to 1.0. Doubled.

The transplant coordinator told me that they suspected dehydration was the culprit but we needed to know if the kidney was misbehaving. I arranged for Julian to bring her Saturday morning and 1/2 a day later she called me (watching the phone throughout the morning board meeting) to tell me that it was back down to 0.6. Lack of h2o the culprit.

I had a mini-freak out session, it’s true, I did. The thing is I KNOW BETTER. I mean, I’ve been through the school of It’s Never a Good Idea to Prematurely Freak Out. Maybe I’m sensitive because of the recent drama we’ve had in the home and me believing lately that the other shoe is close to falling. Because, it’s better to be prepared for the worst.

But crisis averted. This time. I’m told the Quinncess is drinking her share of water but that is something I need to keep up with better for her.

It still keeps moving. We have to act like a family even though the family seems broken with Gage so sad and at odds with happiness. It is excruciating to witness his struggles and not be able to fix them quickly.

I have a BOT meeting for the PKD Foundation this weekend and I am leaving tomorrow. Two days ago it was questionable, but since between us and Gage’s doc we’ve decided against admittance to a psych hospital for kids, we’ve decided I will go. Never as important as my kid’s well-being but important still is our family’s dedication to fighting PKD through the PKD Foundation. Besides helping my kids live the most engaged life they are both able to, and a strong marriage, my work with the PKD Foundation is the most rewarding thing I’m able to do.

I have the privilege to do their work. My work. In honor of Gage and Quinn. Doing PKD Foundation work means that all of THIS (imagine circle hand swoop) that is our life would be with less purpose. So, I leave tomorrow for two nights. The Village is helping Julian, which usually isn’t needed, but given Gage’s situation, it calls for extra hands and do-gooders to be on call.

Part of our deal with living with sick kids is that we just have to keep moving. For them, we have to provide an example of how you still have to keep moving, even in the face of choas. While I admit it is hard to leave during this particular drama, we’d hardly do anything if we let drama get in the way of living.

Quinnlin is less than thrilled because well, I have been at her beckon call for about 28 days straight and who wouldn’t want that? She informs me that she wants both mommy and daddy to be with her this weekend. I wouldn’t be going if she were fragile – she is doing fabulously. Healing nicely, labs look good, able to do most things for herself again. She’s got a little bit of discomfort from the stent but that removal has been put off until Tuesday.

About 50 hours I’ll be gone and I’ll be thinking and hoping and praying for the weekend days to be kind to Gage. I hope that he’ll be able to hang on a little bit longer until we get a hold of his demons for him.