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.
Thirty-one months ago, our family embarked on what we would consider the next phase of our life with two kids who have a whole lot of needs and top of the list was kidney transplants.
I honestly don’t know how Gage would be able to cope with his current bout of depression, anger and sadness if he had to deal with dialysis and falling more behind in school. Honestly. Do. Not. Know.
But for today, I am grateful that is not our hand. Today we get to focus on his mental health instead of his kidney death, all because you gave him the chance to live off of a machine and the numbing existence that dialysis can be for the family.
Thank you for your sacrifice (a body part!) and the risk you took for my baby. My wonderful, smart, sad, beautiful boy. Well, ours together – our wonderful, smart, sad, beautiful boy. We love you and your fantastically behaved kidney. Happy 31.
I have an Internets Peoples friend who is very, very supportive – with first-hand knowledge – of Gage’s mental health issues going through a rough time.
Planned for a while, she’s admitted herself into a psych ward of a nice hospital to do a complete med change because of her safety. She takes care of her mental health like no one I know and she’s covered and smothered with care from her doctors. Wonderful doctors who have treated her for years.
She could use some encouraging words. I’m doing updates for her and checking her emails and forwarding nice ones to her. Her blog is a fascinating honest look at mental health issues from someone who is on the other side of it. She’s not a witness like me, she is the story.
She identifies with Gage as her younger self and somehow I find it comforting when she emails me and says she understands him. I have hopes with our extra help that Gage will end up being a self advocate like she is for herself. She is one of the bravest people I know.
This is her blog. She would love all messages, even if you just tell her she’s brave (am not sure she believes this), or that it will get better. Tell her thanks for being so giving with her insight with me. She found my blog by googling something kidney related and well, that was like at the beginning of Gage’s depression.
She sent Quinn the now TV famous sheep Quinn named Sophia. She also recommended the weighted blanket for Gage. See what I mean? She’s giving and knowledgeable AND BRAVE.
Go ahead and comment. It’ll make you feel good and her feel good. Thank you.
We are recruiting members for Gage & Quinn’s Team because I know something like 20 friends haven’t registered yet! Signing up can be a little pesky, but it just takes a few minutes to get through it, set up your page, create a short URL (like ours, which is www.pkdcure.org/gqteam) and ask 20 people for $20. So go sign up. NOW!
So, what are my friends and family doing? (I know who you are.) Waiting until Walk day? REALLY?
This is obviously important to me. After having just returned from the Board of Trustees meeting last night, I’m more than ever convinced we need to support the work of the PKD Foundation. PKD is one of the kidney diseases that the science community, and the government actually thinks can be treated in the short term future. Longer lasting kidney function would be great for all those with PKD, and frankly for the other people (80,000+ total) waiting for kidneys.
For those that are unable to join the team, you can donate on behalf of me, here.
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.
Quinnlin enjoys her last drive as a native kidney owner.
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.
