I went to a discussion about informed consent last week. One of my midwives is completing her doctorate and this was part of her research (which contends, and I agree, that true informed consent is extremely rare in the medical world today.) It was a good discussion, I thought. Sitting there, listening to the other women talk, I heard many of them saying things about those times when there aren’t any alternatives and informed consent isn’t possible, or talking about situations when they felt all their choices had been removed from them (for example, needing to give birth in a hospital instead of at home). Listening to that, I realized something in a more crystal way than I have in the past.
There is always a choice. Always.
Sometimes the choice is between certain death and a procedure that you hate. But that is still a choice. You COULD choose death. You could. You have a choice.
And doctors need to do a better job of making their patients understand that. There IS a choice. Always.
I know that doctors as a whole aren’t overly concerned about feelings. They want to treat the patient, treat the illness, solve the problem, rescue the princess. How the patients feel about their treatment, their illness, their situation… not as important. And I get that. But I think just this one thing could make a world of difference to people navigating the health care system. If you understand that you have a choice, you feel empowered. If you feel as though you do not have a choice, you feel weak and powerless.
Throughout all of this with Teddy, we’ve tried (somewhat unconsciously) to frame our experiences as decisions. It’s extremely tempting to continually play the role of the victim. “We didn’t have a choice.” “We had to.” Particularly considering that we’ve had to make choices for Teddy that are exactly 180 degrees from what we’ve done for the other two, and from our values and beliefs. It is tempting to say “we had to have him circumcised, the doctors didn’t give us a choice.” And, to be literal, they did not. There was absolutely NO informed consent there. At all. (As I wrote at the time, it took me a week or a week and a half to find my voice again and start insisting on the “informed” part of “informed consent.”)
But I have reframed that, and many of the things that happened in those early days, and since, as “we chose.” Because even though it was not presented as a choice, I still knew I could refuse. I could have. But I did not because I ultimately agreed that the things they were proposing were probably the best course of action. And saying that I chose something, even if I hate that I needed to, is much more empowering than saying that I had to, that I had no choice.
Because there is always a choice.
I’m not quite ready to show ALL of the kidney-related crafting I’ve done lately, but I can show you these pins/magnets that the kids and I made.
I bought a button press a number of years ago. I make buttons for craft shows, baby fairs, Swing Des Moines, etc. and we also just make buttons for fun. We can add pin backs to them or we can add magnets to them. I’ve sold lots of button sets on Etsy. They’re just fun.
I made several of these sets to use as giveaways just for fun on the Champions for Renal Warriors group I’m in on Facebook. The Hello Kidney image is NOT mine, but I am not sure whose it is. I decided that this small potential infringement was OK with my morals since I’m just giving them away. I tried to ascertain who the owner was, but could not. (if it’s you, please let me know!)
I also made some green ribbon soap. This particular batch, I just whipped out kind of fast while I was making some soap and chocolates for a friend’s kid’s birthday – I had all the supplies out, so I made a few other soaps (including some Halloween ones just for fun). This set of ribbon soaps, I actually was merely wanting to see if I could get a satisfactory green from the colorants I have (blue, yellow, and black). The answer: no. So, I have some green colorant on order. I will make some of these for fun giveaways, and then will hope to sell some as fundraisers for Mr. Theodore’s expenses. If we don’t find someone to head up a COTA campaign, I might just go it alone. We’ll see…
I’ve got one other BIG kidney-related project I’d like to complete before the end of the year. We’ll see if I get it done, but I’m super excited about it. And I have a few other kidney-related crafts I’ve completed, but some are for gifts for Christmas and I’m not quite ready to post pictures.
During our most recent hospital stay, I participated in another radio interview for a Children’s Miracle Network fundraiser. The guy asked me a question I actually found pretty offensive. “Do you feel like you got the short end of the stick? You had two healthy children and now this?”
Did I get the short end of the stick? ME? Yeah, that’s who I’m worried about life being unfair to. Me. Seriously? You can tell he’s never had a sick kid.
I don’t remember how I answered the question. I know I started with “um…. no” and ended with some sort of stumbling over myself answer about this being a challenge for our whole family but particularly for Teddy, and how hard it is to watch your infant experience everything he’s experienced.
Our second night was just as rough as our first night that I wrote about last week. After that night, our nephrologist decided she wanted to see us Monday for an Xray, but if we wanted, we could try slightly shorter dwells. So, we changed our dwells to 30 minutes and Poof! Success! It’s been going remarkably well since then!
There is a company called Pumpkin Pals that makes fun bags for feeding pumps. I was going to buy one. And then I realized that they just take commercially available toddler backpacks and convert them. So I bought this little insulated toddler backpack and with the addition of four snaps and one strip of twill tape… poof, I have a new bag for the feeding pump.
The one that came with the pump is kind of small (which will be good when Teddy’s ready to start wearing his own pump) and it’s not insulated – two things which have always bothered me. I can actually wear this backpack AND it’s insulated AND there’s room for a full bag, the pump, and an ice pack.
I love it.
(Prepare yourself for some masterful Tech-y Dialysis Word Useage.)
We had used Teddy’s cycler Monday, Tuesday, and Wednesday in the clinic in Iowa City with no problems at all (which was a nice change). He predictably has ZERO for his first drain (translation: when we put dialysis fluid in before unhooking him in the morning, his body absorbs it all during the day, and there’s nothing left in there to drain out in the evening), which sets off a string of alarms, but since they’re at the beginning of the evening and I can just bypass them, it’s not a huge deal. Otherwise, he filled and drained like a champ. Which, again, was nice.
Fast forward to Thursday night. I get him hooked up with no problems. Initial drain, alarm, alarm, alarm. Three alarms and then we bypass. His drain was 0. Fine. Moving on. The machine fills, then it dwells (the fluid sits in his insides and does its stuff), then it drains. He had just nodded off when the machine started to alarm for the first drain of the night. Low drain volume. So I do what I’m supposed to do – move him around, jiggle him, shake him, then I end up picking him up because I woke him up doing all of this. Alarm, alarm. I pushed some buttons and got it to try to continue to drain, and we eventually got enough out for the machine to go on.
Not draining all that was put in is not uncommon for him with the first fill, so I decide not to worry about it and I go to sleep. And I’m woken up about 40 minutes later to the alarm again.
Same deal. I eventually get enough out by essentially waking him back up and shaking the bejesus out of him.
And just as I nod off again…. beep beep beep beep beep. This time, no amount of shaking is doing the trick, and the machine had a NEW alarm for us. Low UF. (ultrafiltration – it’s the fancy pants word for PD Doing What It’s Supposed To Do.) (He is either absorbing a lot of fluid – or it’s simply not draining out like it should. Evidently, when you’ve been at this for a while, you might have a sense for which one it is, but I of course am clueless.) I have no idea how to go about fixing this, so I give up and call Jen, our dialysis nurse. At something like 11:30 or midnight.
I get him settled back down and to sleep while she walks me through what to do to get it to let us try one more cycle. This time, he acts uncomfortable with the fill. (so it could be that he’s just not draining and now his belly’s pretty full and uncomfortable.)
And 35 minutes later, Teddy is frantic with discomfort and there’s another nonstop alarm about Low UF. Another phone call to Jen. And she decides to have us just call it a night, unhook him, tear down the machine, and she’ll talk to the doctor in the morning.
They decide, rather than change his dialysis prescription (volume of fills, length of dwells, number of cycles), we’ll change the machine so it doesn’t panic if he gets a negative UF and see how tonight goes. If tonight goes just as poorly, then guess what?
Then my little Glow In The Dark X-Man Dude gets another Xray. To check his catheter.
I am declaring here and now that if his catheter has managed to get into trouble even despite being sewn to his bladder I am honestly going to have some sort of breakdown.