"As long as we both don’t think that at the same time we’ll be okay."
We went in to see Dr. Caring today for Gage to get an initial exam for the transplant referral paperwork she’s preparing. As I have suspected over the last several months Gage has been slipping off the growth charts ever so slowly. He’s at 5% now thanks to failing kidneys after holding somewhere in the 15-20% over the last 18 months. And if he has any chance at growing normally we need to start daily growth hormones. You know that gets into the body by way of a needle, right? But wait! They don’t hurt as bad as EPO because they don’t sting! And the needles are really small! It’s an easy shot!
Gage and Quinn and Luke (I say Lukey) and his older, much wiser sister Eliza. Three of the kids in this photo have ARPKD. Two of them are mine. All four of them are as wild as can be as they are in search of fun all the while keeping their weary parents on all ten toes hoping that what they end up destroying is owned by someone understanding. I had the privilege and pure joy to watch these kids bond in their once yearly (or twice yearly, if we’re lucky) visit.
I have just returned from my 5th PKD Conference in Washington, DC (we’re dry now, thanks for asking). And it was tiring and emotional. And it was fun and emotional. Because folks, I just can’t sit and watch a small group kids with ARPKD (these wild ones, plus a few more), one transplanted, the rest somewhere in the middle of stable and transplant ready and not be emotional. Knowing that one day soon I will pull out these pictures and say "See, they have kidneys just like yours. You are not the only one, and I bet they know exactly what you are feeling."
Priceless experience being able to help Gage and Quinn feel normal within their subset of PKDers. All because of the PKD Foundation. Can hardly find the words to say thanks for that one.
Edited to add: One of these days I will write an appropriate post about Luke, Eliza and Charlie’s mom, Kirsten. I’m not sure I can find the right words to say thanks. Luckily, that won’t stop me.
This is Quinn on "Date Night" with Mommy and Daddy. Gage was away with one of his most very fun cousins, Andrew having a ball and we were desperate to go out decided to take Quinn out to dinner with us for sushi. When we saw me changing she decided she needed to dress up. This was the outfit she put together. Just like that.
And if you think she didn’t carry the purse, wear the gloves and wave that wand around our favorite sushi place…you would be wrong, so very wrong.
I know, I know. There’s more to us than one complete set of mutant genes. But lately that’s all the keeps coming up.
On this Father’s Day I want to honor Julian for all of the reasons (I can think of) he’s a great dad.
He loves me. He shows the kids a fine example of a true partnership. When the kids pick the loves of their lives, it will be ingrained that they should be respected and respect.
He gives them his time. They’ll never wonder if they mattered to their Daddy because he engages with them.
He has a relationship with God. They will know that having a relationship with God means more than praying. That you have to put that relationship into action with your time, service, and money.
He has a great work ethic. Of course they’ll think that you only have to commute downstairs, and you don’t always need a shower to work, and you can take a break when two particularly cute kids have something to share. But they will know he gets the job done.
He can meet their needs. When I’m not around they certainly know they can depend on him. He knows their routine, their meds, their doctors, their teachers, their favorite things to do and play with. That teaches them to be dependable.
He’s got a sense of humor. He likes to laugh and play. They’ll know that you can be serious about life and goals and achievement, but that you can have fun while you are doing it and sometimes at your own expense.
He’s not afraid to cry. They’ll know that it’s okay for a man to show emotions. And when they are older they’ll appreciate that freedom and so will the people that love them.
He listens. And he’s not afraid to change his mind when appropriate. They’ll know that it’s okay to have opinions and listen to opinions different than their own. They won’t be afraid to change their minds when it makes sense for them. And they’ll grow up to be tolerant of other people’s choices, lives and opinions.
He loves them unconditionally and with every ounce of his being. They will know that true love exsists. And they will share that with others and that will enrich many lives in Gage and Quinn’s lifetimes.
So…thanks Daddy. For impacting all of our lives in ways that we see and feel everyday. And for the immeasurable ways too that we can’t even imagine in our wildest, most wonderful dreams for the future.
Given what we learned about Gage’s immediate future, it seems like a good time to show a picture of "Reflective Gage" (what we often call this look). He is usally in deep thought and doesn’t even know others are around much less taking photos of him. During this camping trip I took a couple of pictures of him and then he slowly looked up at me. His expression never changed. He’s not sad. Not happy.
That is the one statement we hear time after time. And while it’s mostly true, it’s proving harder to say with his skin color, energy level and sunken eyes. This is a picture from January. Not that long ago.
Dr. Caring called this morning and told us that it’s time. Not in a "it’s time!" happy kind of way, but more in a "it’s we-knew-it-was-coming time" kind of way. We’re not surprised.
I will say, it doesn’t take my breath away like it did in December when she told us it could happen within a year and a half. My how time flies. We’re not shocked, stunned or surprised. It came faster than we thought. But we’ve been trained well to keep expectations low. We’ve learned that in the world of progressive diseases, the name means exactly that. We get it.
We discussed the two city options for transplant and it sounds like we would stay here to have it. We need to set an appointment for Gage to be seen by her, then the referral is sent. We’d go for basic orientation to meet the transplant team and start the process. It’s my understanding that we’d test a few people with Gage’s blood type (0 neg) and then choose from those people the best match to go for two day testing. We’d probably shoot for 6 months out and see how his kidneys hold out. Because wouldn’t it be great if this happened next summer and school wasn’t an issue (I demand that you think it with me now: low expectation). The main goal? To keep him off of dialysis.
We discussed the number of pediatric transplants in our city. How many kids were Gage’s age? Good question. Not sure. We talked about this being a good age developmentally to have a transplant. You know, before puberty sets in and teenage rebellion (non-compliance issues with meds) hits. And well, isn’t that a fun time anyway.
Okay. So there. Out to dinner tonight. Drinks on me.
Here are a series of emails from Dr. Wonderful after getting Gage’s lab results yesterday. This email correspondence occurred after 10pm. It’s no wonder we’re drawn to her.
ME:
I’m about to fax these, but here are the highlights from today.
A bit better, yet still at the point of making me nervous.
And Gage. Well, he is doing great with urine during the day. Typically wetting through at night with a midnight-2am change. We can live with that. The accident decrease thing we think is a result of "graduating" kindergarten mixed in with some behavioral mod things we are doing. Will urine output go down with decreased kidney function? (Dr. Google couldn’t answer).
He seems sickly looking to me, pale with red, tired eyes. He tires easily and overtires easily if we are not careful. He still seems to play enough each day. His life is full.
Stable huh? Still freaking us out. Mostly I’m just so sad for my little boy, but I’m guessing you can’t help with that.
Yes — I agree — this should make you nervous. And yes — as his urine output will go down as his kidney function declines. Good news, bad news.
At this point Gage’s kidney function is ~20% of what it should be. This likely explains his fatigue and his pallor.
As a mother, I do understand how sad you are for your little boy. As a nephrologist, I can’t fix it but I can be there to support both of you. Stable — I am looking for small victories — no less, no more. Feel free to continue this dialogue as you think I can help. ___________________________________________________________________
SEVERAL people people have inquired about the monikers I have for our two nephrologists. Dr. Wonderful and Dr. Matter of Fact (formerly Dr. Kind). These people thought that I might be showing favoritism by giving a warm and fuzzy name to Dr. Wonderful and a less warm and fuzzy name to Dr. Matter of Fact.
I certainly think that Dr. Matter of Fact is still Kind. She’s a lovely woman, about my age, a knowledgeable nephrologist, has two young children who attend the same school as Gage, and she remembers details like the kids’ lab numbers while were splashing at the neighborhood pool. I’m serious. Last summer when Gage’s labs were climbing (not good) she came up to me and asked if her nurse had gotten in touch me with about the numbers and med changes. Um…yes she has, thank you very much. She recited the lab numbers correctly and we had a little chat about the next lab time, and another med change that was coming. It impressed me that she remembered the labs, recognized us out of the office and went into detail with me about numbers and meds.
A while back – probably about the same time as the pool incident – I started to appreciate her approach. So I renamed her. From Dr. Kind to Dr. Matter of Fact. I said then that I thought she was still kind, but I was so appreciative of her bedside manner with me I innocently changed her name, not realizing the uproar it would cause the people in my real life. So, with no more waiting, I present to you: Dr. Caring. Happy now?
She’s either proud of how she can finally make the swing go or she is extremely happy to show off her self written name tag or she is excited that she can use a straw without opening her mouth. Take your pick.
Life with two special needs kids…if you call kidney transplants and navigating the special education system special. I must admit that these kids are special and extremely cute. And mostly fun except when they make me really tired.
“Let’s face it. There’s something very mystical about taking an organ from one person and putting it back into another.” Dr. Robert Montgomery, Sr. Transplant Surgeon, John Hopkins
