Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Trick or Treat

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Genna was Andromeda

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Teddy was Yoda (only because I happened across our knitted Yoda hat!)

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Wally was Perseus. Awesome bucket, eh?

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Informed Consent

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.

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Kidney-related crafting

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.

Buttons

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!)

Soaps

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.

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Interesting Question

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?”

WHAT?

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.

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How Dialysis is going

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!

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New bag for feeding pump

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.

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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.

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First night with the cycler

(Prepare yourself for some masterful Tech-y Dialysis Word Useage.)

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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.

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There are only 24 hours in every day.

I don’t know if this is a fact that a lot of people who are trying to be helpful just don’t understand, or what? This conversation I had with the social worker is extremely similar to a conversation I had with a nurse while pregnant with Teddy.

The topic was How I Manage Stress. I tried to sell her on the idea that I’ve transcended stress. I don’t have time to worry about my stress, so I just don’t. This is better than stressing about my stress, which is what I used to do. She wants to know concrete things I do. Well, when I can muster the energy, I clean. I don’t do baths, or massages, or long walks… that just gives me time to obsess and to think, which is counterproductive. I could probably stand to work out, but I don’t have time.

How much time do you need? Well, I thought the recommendation was 20 minutes 3 times a week. Do you think you could ask Randy to take the kids after he gets home from work and you could work out for 20 minutes? Ok, sure. So after a long day at work, he’s supposed to leap right into taking care of the kids during their whiniest, most challenging time of the day? And instead of working out himself, which he clearly needs more than I do? And we’re assuming that, if I had 20 minutes, I’d choose to exercise??

I skipped right to that last one – if I had 20 minutes, I’d probably be better off spending it working. Because if I don’t keep up with Wallypop, I just get MORE stressed. How much work could you possibly get done in 20 minutes? Well, assuming I’m caught up, and depending on how many orders I have, I can sometimes get a days’ worth of orders ready to go out the door in 20 minutes.

OK, well, can’t you do that in the 20 minutes AFTER your workout?

WHAT? So now we’re assuming I have 40 minutes? And we’re still assuming that if I had 40 minutes, I’d spend half of that time exercising? Because I’d STILL choose to work for that full 40 minutes.

And I also made the point that I’m working under an extreme sleep deficit and if I realistically thought I had 40 uninterrupted minutes, I’d probably spend it either sleeping or catatonic in the chair.

I just don’t understand what is so hard to comprehend about this.

24 hours in a day.
4-5 hours school
2 hours in the morning doing Teddy stuff (washing bottles – and dishes, drawing up meds, feeding pump stuff, dressing changes, bathing, whatever.
1-2 hours household tasks
6 hours pumping
4 hours Wallypop (ideally)

That’s 17-19 hours right there. That leaves 5-7 hours for sleep, personal care, and doing fun things with the kids. And I haven’t included PM time with Teddy medical stuff because I don’t yet have a good idea how much time that will take.

Do you see an extra 20 minutes in there? I don’t.

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Food

Now, Teddy’s EXCITING news. He ate food. With his mouth!

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that green stuff is peas!

Teddy’s not much for oral eating. He actually does MUCH better these days than even just a few weeks ago with keeping down food he eats orally. (he used to reliably vomit everything he ate orally, to the point where I sometimes just gave him water in his bottles because he would just vomit it all up and I couldn’t handle wasting breastmilk like that.) But he just doesn’t eat unless he’s pretty hungry, and the sheer volume of breastmilk he must take in every day largely prevents him from ever feeling that hungry. These days we’ve been spending on the dialysis unit, I haven’t been bringing the pump, so he only gets whatever he takes orally, and he does pretty good… except he is averaging only 120 mL the whole time we’re there (4-5 hours), leaving me to make up the remaining 390 once we get back to the Mac House. yikes. Before this whole hospital debacle recently, he was taking about 15-20% of his daily intake by mouth.

And he wouldn’t eat food. He started out accepting food into his mouth, but gagging if it reached his throat. Then he progressed from there to gagging if food was in his mouth, and to gagging if food touched his lips. And gagging if anything touched his lips. When we’re in the hospital, I usually just try giving him some baby food every night or every other night, because why not? It’s there in the cupboard. Well, one night, after gagging on the first several bites…

he actually swallowed a tiny bite without gagging or vomiting immediately.

Yes.

It was exciting.

For like a half hour. Then in that half hour, he threw it all up, blew out two IVs, and had to have a new IV placed in his hand. It was an exciting half hour, and I realized that I strongly prefer breastmilk vomit over baby food peas vomit.

But the next night, he kept it all down, and I even put some extra in his tube and he kept that down, too.

And he’s been doing OK since then. I mean, he eats about 2 teaspoons MAX. Only peas. He still won’t eat finger food. (Which is so odd – I did the whole baby food thing with Wally, but Genna never had baby food, she just ate regular food with her finger. Teddy will put everything he touches into his mouth… unless it’s food.) I gave him some apple the other day and he had it in his hand and then his hand went to his mouth, and there was a lot of dramatic gagging over that. sigh.

But it’s progress.

I am obviously going to keep at it, but I’m also going to proceed with doing blenderized diet with him. I have broached the idea with Chris, the nutritionist, and she doesn’t seem opposed (not that her opposition would stop me). I am hoping to get some better parameters from her this week and we’ll get started in earnest.

She had stopped by while Teddy was inpatient with a can of PM 60/40 and called it our new friend and wanted to start supplementing with a few scoops of that in his breastmilk. I might have cried a little… ahem. I strongly don’t want to do formula. I think she was under the impression that I was willing to start after his first birthday, based on some digging I had tried to do with her about whether she was going to think breastmilk was enough for him as he approached 1, and also my admission that I really don’t want to keep pumping every 2-3 hours around the clock for the rest of my life. I had been looking for info on whether I’d need to start thinking about BD stuff sooner rather than later… she (understandably) assumed I meant I’d like to switch to formula.

So instead, we decided to up his protein powder, and I said I’d start food in his tube. What I need to find out, though, is what the purpose of the formula was – fat? calories? I can add oils to his diet thru his tube and increase his fat intake, that should not be a problem at all. 🙂

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Update

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Teddy had a really rough recovery from surgery last Monday. I think he was just sore and ouchy and it got to the point where I started wondering if they had accidentally removed his Happy. But finally on Friday, he found his Happy again. Yay!!

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Friday night we had the nurse I hate and she made our night kind of miserable, but we were discharged on Saturday. (and I’m serious when I say that I considered taking Teddy on a long “walk” and spending the night at the Ronald McDonald House Friday night and strolling back in Saturday morning.) So… we got home Saturday late afternoon, spent a good day and half at home putting away our dialysis supplies that had been delivered in my absence, catching up on laundry, and cleaning/picking up the house.

Genna is very angry with me and kind of bounced between being angry and being really sweet and giving me hugs and telling me she loves me. Sigh. We’ll have to tackle that one later.

All of that week, we did manual dialysis with him, increasing the volume and the dwell time. (volume = amount of fluid that goes into his belly. dwell = the length of time it sits there.)

Monday morning bright and early, I reported back to the dialysis unit for Cycler Day, Take Two. Monday went really well! Tuesday, we increased his volume to 200mL (which both does and doesn’t seem like a lot) and he was kind of miserable with that at first, but seemed to do better with subsequent fills. Tomorrow, we’ll actually have our first dialysis clinic day, which involves labs (with no port, so he gets a venipuncture!) and talking with everyone on the team. He’ll also do another day’s worth of dialysis on the cycler, and we’ll get our dialysis prescription for at home.

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New haircut (first one) and new extension set!

Then I get to go home! Jen, our nurse, will do a home visit Thursday, and we’ll have our first night at home with the cycler on Thursday night. My goal = get through the night without calling Jen. 🙂

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