The liver nurse called for the liver doc and said the doc cleared Quinn for transplant. She’s going to speak with the kidney team tomorrow (I know! So many teams!) and then we will work on schedules with our awesome transplant coordinator when she returns from vacation (who said she could be off this week anyway?).

This was picture was taken seconds after we told Quinn that we were about to schedule her transplant…

The conversation went something like this:

Me: “Quinn, that was the nurse telling us you are ready to get a new kidney!”

Quinnlin: “What? Ahhh. Ohhhhh.”

Me: “We just need to schedule it now with all the doctors. You look worried.”

Quinnlin: “I’m scared, really scared, about them cutting me with knives and it hurting a lot!”

Me: “You will be asleep when they do it, you won’t even see the knives.”

Quinnlin: “I won’t? Cause I thought I had to see the knives. What else can I do when I am there? Can I play? Do I just lay? I remember Gage just laying.”

Me: “You will be tired for a few days. Gage didn’t even get out of bed for a couple of days and that is when they let him eat.”

Quinnlin: “What! They won’t let me eat?!”

I’ve texted QPD#1 (Quinn’s Probable Donor #1) about it and her response:

“Yippee!”

I’m no doctor but I’ve just compared last round of Quinn’s labs with this round and I’m guessing since the three numbers no longer have a HIGH and an ALERT noted carefully that the liver doc might release us to schedule transplant.

Of course, she might NOT. She might want more of a history, like another round or two of labs, but maybe this will be enough.

You know that when I know, you will know. But the numbers have gone in a very good, right direction. So that’s progress towards something better.

I’m secretly looking at dates! I know! Tell me right now! I demand you tell me to “Stop that right NOW! Because Baby, no good will come of it!”

Sometimes we just look ahead. We try not to, we really do. But that is a Momma’s nature. Looking ahead for her girl.

In the last year I met a brilliant nephrologist, witha great bedside manner to boot, through the PKD Foundation. At the time he had just joined the facility that will do Cheryl’s surgery as well as pediatric transplants at Children’s. He came to the facility with experience in research for new drug therapies along with transplantation on adults and kids and a bunch of other credentials.

I heard him speak at a local PKD Foundation meeting  about the research available on a no steroid protocol. As with many new ways to handle advancements in treatment for transplant after care it takes a while for protocol changes to happen with kids. Gage wasn’t able to be a recipient of a no steroid protocol (drats!) even though other centers around the country had gone that route successfully (ask my friend Rachel about her Bryce) for a while.

But it has happened. There is now apparently a no steroid protocol for kids and I think Quinn will be able to be one of the first kids on it at our hospital. How awesome is that?

While I’ve been conversing by email with this doctor (BTW, he freely handed me his card that day we met and said if there was anything he could do…) about Quinn’s impending transplant. When I mentioned to him that I was interested in Quinn being on the new protocol (and Gage reducing steroids because I’m certain they don’t help my boy’s unique propensity of aggression and impulsivity)  they hadn’t yet begun it but he was thinking that it would be soon, and here it is.

I emailed him a flippant comment about how I am always in the face of the transplant team and I hoped they didn’t flinch when he mentioned my name, this is what he said back to me…

“Not at all. They recognize you as a passionate and well informed mother for whom they have great respect.”

That was extremely nice for him to email me with that note. In fact, I saved it on my cell phone for future peeks at it when I am hitting a moment of frustration in being an advocate for the kids.

My latest advocacy efforts - besides the actual transplant, my nephew’s needs, and special education services have been to get a kidney removed from Quinn. As with Gage, she has excessive urine output and it impedes her social life and her emotional well-being because of her being self conscious about it in how it relates to overnights.

I really had to jump through hoops to have one of Gage’s removed. Originally I had wanted both out, but Dr. Kind talked me into one (in case the transplant failed and he went on dialysis, at least he would have output and would make dialysis less complicated), then she said we could go back and have the other one removed.

For Gage, there was a face-to-face team meeting, a 24 hour urine collection and appointments with a urology surgeon, and calls and reports back and forth. My point was that they were already going to be in there, why not get it out? There were (are) people that believe that since they have never done it and they don’t have scientific proof that it would help with the reduction in urine output that we should leave the kidneys in. Sometimes though, because all of our kids are different (the biggest understatement in the world) us parents know them best. We noticed a small reduction in urine over the months following Gage’s kidney removal. Then one pull up, not two. Then dry pull ups and then none. I will always believe that the removal of the kidney is what helped. A person who denies that could be a reason is unreasonable - because we can’t know for certain.

If we as a medical community never try anything new, within reasonable, safe limits of course, nothing will ever improve. That makes sense, right? Because if there weren’t any different ways to do proceed for kidney patients, like dialysis or transplant then where would we be?  You realize that someone, somewhere looking at a renal failure, dying patient said, “Let’s take all the blood out of them and clean it! Yes! Just clean out the toxins then put the blood back in!” And if someone hadn’t said to themselves, “You know, I think we could take a kidney from a deceased patient and give it to someone else.”  Then Gage would already have died and we’d be watching Quinn die. We have to keep moving forward, trying and failing and trying and succeeding.

Deep thoughts for a Wednesday, I know.

So, I’ve moved on from pushing for the transplant before the need for dialysis to the removal of the kidney. The sentiments about me from the doctor above flashes through my head because that is one way a team of people could think about me, and I hope that is the case.

Again, if they don’t, that’s okay with me. I sleep just fine at night.

I hear (through a very reliable source) that Cheryl is approved to give Quinn a kidney. Kinda. Sorta. Probably. No really, she’s mostly approved, almost completely, depending of course, except for one little detail.

That Liver. The one we looked at today closely with the eyes of an ultrasound Doppler thingy. Quinn’s also been put back on a liver med she was taken off of in December and we’re hopeful her liver numbers will come down. We retest next week (I’m shooting for Thursday to take her so I can follow up with liver doc Friday).

After I spoke with our transplant coordinator I told Julian, then called Cheryl. I said…”Hey, I guess we didn’t have to wait, you are apparently approved by everyone, and so you can donate to Quinn as soon as the liver team clears her…so I guess this is a kinda, sorta approval and this is probably going to happen.”

I know, anti-climatic, right? But we were still thrilled and thankful and Julian and I sealed the news with a kiss at the office. I could tell Cheryl was happy and excited to be this far along, too. I figure when we know for sure, for sure (that means when a surgery is scheduled we can have some kind of celebration with Cheryl’s family.

Until that day we need to wrap up some things…

• I need to confirm with a doctor a new med protocol.
• I need to see if our application for a medical spending account is/was approved through a non-profit here - they match funds - and then use the money for meds, etc.
• I need to get confirmation of the removal of Quinn’s kidney.
• I need to get someone to head up a little care team for Cheryl and her family for food and such during her recovery.
• I need to finish the process for applying for medicare/medicaid for Quinn.
• I need to make a work plan for me as I am the primary person for all things medical.
• I need to make a care plan for the relative we’re helping while we’re out of pocket.
• We need to decide about timing for surgery - rush and get it done ASAP or wait until after school starts. There are a lot of factors, including; work flow, personal, school start, Cheryl.

That’s enough for now, I guess. I need to go to bed so I can rest up.

Quinn has to have a doppler ultrasound (check for blood flow for the liver) at 12:30 today and she can’t drink or eat before. Sure, she could have gotten up before 6:45 and eaten, but where in the world is the fun in that?

So after my nephew’s drop at his program the sitter get here and I work a bit, I’ll take her to Children’s Hopsital. Hoping there’s absolutely no change in the ultrasound from last December. I am not expecting a change to be honest. I’m not expecting some crazy call about how bad her liver is…seriously.

But you know that is WRONG, WRONG, WRONG of me.

Why?

I write this as I sit in the radiology waiting room. I don’t enjoy waits of any length. I have no patience. None at all. But I sit here & I know why I sit here waiting, without a doubt, no matter how many times they assure me that I can back out at any time. I will not.

I am typically a person of decision. I have no process that I go through, no analysis. I look at the situation & the answer is already there. I don’t ever remember making a conscious decision to donate a kidney to Quinn. It was something that when the request went out, I just knew, - that was what I would do (although at the time I thought it would be Gage). I’ve never doubted my decision for a second, if it was a decision.

I mean, most of you know the Roberts – who wouldn’t want to help, if they could? And I know all of you Internet Peoples (as Quinn calls us) have already helped in countless ways. And you’ve included me & Quinn in your love, prayers & good karma wishes. For this I can’t thank you enough, because at the end of the day the only thing that is important is - that Quinn gets a transplant & a chance at healthy life. A life where she gets that first kiss, goes to the prom in a spectacular dress (one with lots of bling for our Quinn!). A life where she gets to hang out with the girls at the beach, drive her mom’ second or third hand Volvo & run & play & dance.

But in the end, I want to donate for only one reason & one reason only – I love Quinn. I love Julia, Julian & Gage. And to all the Emory doctors, CHOA doctors, social workers, nephrologists, psychiatrists, transplant coordinators, I know you have to ask me the same question over & over again: “Why do you want to donate to Quinn?” And this is my final & best offer & it is enough – love.

So I sit patiently (patient as I can be), because as a good friend reminded me recently, doesn’t it all come down to one thing anyway?

Love is Patient

Love is Kind

I Corinthians 13:4a

And that is why.

Word is that Cheryl is approved to donate a kidney to Quinn from her team! Completely awesome and overwhelming and kind of unbelievable. We still need approval from Quinn’s team, but we are very close. And then there’s That Liver (which we should ALL refer to as That Liver, hoping to shame it into behaving).

It’s hard to describe what going through transplant #2, child #2 feels like. I can’t really lay claim to it being new and shocking, but it is new and shocking in its own way.

The same fears are still there, but they are buried. Because Gage’s transplant was successful, I have an expectation about Quinn’s being successful. Unfortunately, there are the same risks for complications and I can’t ignore them.

Cheryl is offering Quinn the chance to stay off dialysis. She’s offering the chance for Quinn to feel better and have a better quality of life. A life of energy to match the sassy her personality embodies. It’s hard not to hope for those things for Quinn with reckless abandon.

So there is a delicate balance inside my head that is taking place at any time during the average day. It’s balancing the hope while bracing for the (scary) possibilities because we’re a family that must deal in the reality of a life of uncertainty. Most days, average days, I’m able to act and move along like your average mom taking care of regular things for our regular family. But every so often the family we really are creeps in and I fear for the lives of my kids. I wonder how could we make it through everything we’ve been through as an intact, functioning family with laughter and love and promise if our worst fears are realized.

And so, for today — most especially today — we’ll be celebrating a life of promise in front of us. And we’ll hope that Cheryl can indeed give Quinn the ability to sassy her way well into adulthood.

That’s my choice today. And I will fiercely protect it for as long as my heart will let me.

The liver is misbehaving, she is. The lab numbers were triple and this is putting Quinn’s transplant in a little bit of a holding pattern because the kidney team needs clearance from the liver team for transplant.

Quinn’s liver doc called late Friday to tell me that she wanted to put her back on Actigal. She’d taken the kids off of it in December because she’d said there was research that showed it wasn’t all the helpful and in some rare cases it could hurt the liver. But when Quinn was on it, her liver numbers were stable. By “stable” I mean they were high, but they were normal high. Quinn’s high. Slightly fluctuating week to week.

She said there might just be some “sludge” caught in the liver and “let’s just make everyone happy” and put her back on it to get the numbers down. So that is what we are doing.

We are also going to have a liver ultrasound in the next few days to just have a look-see. Maybe something will come of that, maybe it won’t.

I’m not very worried about this development even though it slows us down because Gage and Quinn have always had stable liver function and the doctors said failing livers were well in their futures. I suspect it was either a fluke of the lab (unlikely though) or that the Actigal really did help her and we’ll see a decrease in numbers soon (couple of weeks?).

This is just one of the things that come up. The unexpected. The one situation that makes you have to go slower with the plan. I can’t say I’m surprised. I can’t even say I’m freaked out.

And that really just speaks to how trained we are not to get our hopes up to a level where you fall hard. I suggest you do the same. Let’s all just chill while we wait.

Cause waiting? That we have and can do.

When you are caring for a couple of sick kids it means you have to be in front of a lot of health care professionals. Doctors, nurses, assistants, insurance staff/accounting, technicians, clerks. You come into contact with a lot of people and a lot of personalities.

On any given week we’ll see 15-20 people in the regular care of Gage and Quinn. When the situation calls for more care (um, like, you know, a KIDNEY TRANSPLANT) there are just more people (and paper work and tests and results) to navigate and manage. As in life, you don’t click with everyone you interact with on a daily basis. People rub you the wrong way (you rub people the wrong way) and they are dismissive and insensitive. Some are dismissive in a way that is condescending. Which can be both infuriating and eye-opening. Because that probably isn’t going to change on the 2nd, 3rd or 20th visit so it’s best just to find a way to deal.

What I want for one of my kids doesn’t always line up with what their health care providers believe is best for them. And that’s okay. But it’s not the last word.

That’s why they invented The Second Opinion.

It doesn’t matter what the issue is; it is your business, your right and your responsibility to get your questions answered. That is why there is a 2nd opinion.

Getting along with everyone, everyday just isn’t possible, you know? Sometimes you can’t change providers; the options are limited in your area, your hospital or specialty and you have to work with who you’ve got. It goes back to intuition. Follow your intuition. Always.

For my kids, it’s my responsibility to make sure I follow my intuition no matter who is providing care - from front office to doctor. Sometimes I have to be creative in managing all the situations. Sometimes it is okay and right to push back. And you know what happens? People get pissed off. And you know what else? I’m okay with that. Because when I’m tucking my kiddos in bed, never, anywhere in my thinking about the day behind us is one thought about who I might have pissed off while being their advocate.

Semi good news from Cheryl’s team that she is probably a good candidate for kidney donation. They want to just double check a test. Now her information will be given to the pediatric team of Quinn’s and they will decide if the kidney is a good fit for Quinn.

I know this all sounds extremely posititve. But I beg you - do not get excited right now. Cause you know it’s not really real until they are both wheeled into the operating room. Do not make the mistakes of our past - do not assume it will all work out. Because there is still a chance it will not.

We’re not exactly pessimistic. We’re just not overly hopeful. We’re hopeful. But not HOPEFUL, HOPEFUL.

And if you know what is good for you…you will handle it the same way.