About PD

Just thought I’d throw out a few links for those of you who have been asking me what peritoneal dialysis is/isn’t.

Briefly: it cleans the blood using the peritoneum as a filter. (the peritoneum is a membrane that lines your abdominal cavity.) It gives you approx 10% kidney function. It does not repair kidneys. You cannot live on dialysis forever.

 

http://www.nationalkidneycenter.org/treatment-options/kidney-dialysis/peritoneal-dialysis/?gclid=COb9pY-517ICFegWMgod9wkAow

http://www.webmd.com/a-to-z-guides/peritoneal-dialysis-4391

http://www.mayoclinic.com/health/peritoneal-dialysis/MY00282

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Back to School

So, I kind of forgot to update here, but we DID go home last week on Tuesday. Spent Weds, Thurs, Fri, Sat, and Sun at home. Monday morning bright and early, we dropped the big kids off at Aunt Kelly’s (much to Genna’s disappointment, poor girl) and headed out to Iowa City to start dialysis training.

Randy and I are both here, staying at the Ronald McDonald House, and we go over to the clinic every day to do training and Teddy gets some manual dialysis while we’re learning how to use the cycler. On Friday, we’ll actually hook him up to the cycler for the first time.

We get to go home for the weekend, and then come back to finish up next week. Not sure how that’s going to go over with Genna, to be honest, and we’ve been trying to think through Plan B for her for next week if necessary. She’s having a hard time.

We get our delivery of dialysis supplies on Weds or Thurs of next week, and then we’ll be on our own with the dialysis machine. whoo hoo. I’m still not overly enthused about it, but I am sort of eager to get on with this phase of Teddy’s journey.

A few thoughts for the day

When Teddy was first diagnosed, two of my real-life friends put me in contact with two women who were also mothers of kidney babies. One was a gal who had a blog. Carmen was the inspiration behind this blog, actually. A LLL leader friend of mine was trying to answer some questions for me about breastfeeding with renal failure and in her looking, she found Carmen’s beautiful blog, which included both babywearing and breastfeeding pictures (awesome), and lots of happy uplifting stuff and lots of honest raw stuff.

One was the neighbor of a friend of a friend – my friend Lisa had posted about Teddy on her Facebook and one of her friends in Seattle remembered a neighbor mentioning her son had just gotten a kidney transplant. Heidi responded very kindly to my awkward initial email, which had to seem like it came out of the blue. (Happily, I have come to know that Heidi is also a researcher and a reader like I am and she shared with me many of the kidney-related research blogs, twitter feeds, email loops, etc. that I read.)

I can’t tell you how much Heidi’s and Carmen’s friendship and knowledge and shared experiences have meant to me over the past 9 months.

Heidi also hooked me up with Champions for Renal Warriors, a Facebook group of other mamas with kidney babies (or children). It’s a great place for information and support, commiseration, ideas, and just a sense of not being alone in this. We eagerly await news of successful surgeries, groan together over C-Diff episodes, share our ups and downs, etc. I’m making it sound like we all hold hands and sing Kum Ba Yah together, which we do not… but you get the idea.

One of the kids in the group has had a big struggle the last year or so. Sami, like many kidney babies, has had lung issues in addition to kidney issues. (your lungs need amniotic fluid to develop properly and if the kidney issues result in low fluid too early in the pregnancy, the lungs get shortchanged.) Since I’ve known her, she’s been in and out of the hospital – in more than out – on the ventilator. She was big enough to get her transplant, but not healthy enough.

Sami died yesterday, 2 years old.

Last night, families around the country lit candles, turned on porch lights, set of fireworks, let go of balloons, or turned on every light in their hospital room (in our case) in honor of little Sami.

I know her situation was much different from our own, and to that point, it doesn’t make me MORE worried about Teddy. His lungs are fine, praise God, and I know that fact alone puts him ahead of the statistical curve. But I think ALL of us moms of babies/children with kidney failure worry about our kids, and it just hits a little too close to home. Sami’s been through so much, and her mom Jenifer shared a lot of their journey with the group – many of us grew to see Sami as one of our own, and losing her is just hard.  I cannot imagine what Jenifer and her husband Dean are experiencing.

What’s growing with BONUS interesting medical research

So, this time, it’s our old friend enterococcus plus acinetobacter. According to the CDC, “Outbreaks of Acinetobacter infections typically occur in intensive care units and healthcare settings housing very ill patients. Acinetobacter infections rarely occur outside of healthcare settings.”  It’s another one of those that’s resistant to a lot of things. Happily, Teddy’s enterococcus is susceptible to one of the cillins and the acinetobacter is susceptible to one of the cephalosporins. He’s had negative cultures since Friday, and we’re hoping to hear from surgery today re: scheduling that catheter replacement.

Conclusion: Teddy needs to spend less time in the hospital.

—-

 

The Renal Fellow Network blog recently had a post about buried catheters. Evidently, some hospitals, when they insert a new PD catheter, leave the external portion of the catheter buried inside the patient. When it’s ready to be used, they make a small incision in the office and pull it out. Since it’s buried, the catheter and the tunnel are less likely to get colonized with bacteria, and they’ve found that this procedure reduces the incidence rate of peritonitis and tunnel infections. Interesting, eh? Of course, this is on ADULT patients… I don’t know where one would begin to bury the external portion of a catheter on Mr T.

But this is what I found most interesting: “The period prior to externalization varied between 2 and 788 days with an average of 40 days. There was no relationship between catheter embedment time and the risk of catheter failure. 90% of catheters worked immediately and of the remaining 13 catheters, 12 were easily corrected laparascopically.”  Geez. Wish that would hold true for us.

The post where I get all weird on you about breastfeeding and pumping

So one thing that breastfeeding moms are into is getting together in groups and nursing. I don’t know why, other than that breastfeeding is still mostly a fringe, freak thing that it feels good to get together with other mamas who breastfeed and not feel like the lone breastfeeder in the world. (Also, breastfeeding is still, unfortunately, something most Americans do in private, so even if you’re NOT the only nursing mom in, say, a restaurant… chances are good that you’ll be the only one nursing your baby while eating dinner. And chances are good that someone will glare or comment, either directly or indirectly.)

There’s an event called the Big Latch On. It was fun last year to go to, pregnant and with Genna.  We latched on at the specified time, raised our hands, and were “counted.” We were part of a worldwide event celebrating breastfeeding. And this year, I wasn’t part of it. Oh, I could have, to be honest. Genna still nurses. (Though, because Teddy’s intake needs are so high, I can’t let her nurse as much as she’d like.) But the event doesn’t “count” moms who pump. The national event organizer actually suggested that the baby doesn’t have to be nursing – just latched on. sigh. (Teddy will gag and vomit if I try to put my nipple in his mouth.) She also said that we could certainly be part of the event – just when everyone else gathered to latch on and get counted, we’d have to stand awkwardly off to the side, our Herculean efforts to keep Teddy on breastmilk going uncelebrated.

There’s another event, evidently, the Global Breastfeeding Challenge. Pretty much the same thing, but this event is also partially to raise awareness of milk banking. I was surprised, then, to read on the event website that, again, only “latched” babies “counted.” I am, however, pleased to report that the global organizers have emailed me back and reported that they leave it up to each local event organizer to decide how to count participation – latched baby, hooked up to pump, etc. (I’d suggest that hooking child up for a breastmilk bolus thru the tube ought to count, too.) THAT makes me happy.

But here’s where I get all weird. On Facebook recently, a group of which I’m a part posted the link to the Challenge event and I posted that unfortunately the event excludes EP (exclusive pumping) moms. The response was “Yeah, I saw that, but I love the idea of nursing moms getting together as a group anyway.”

Ok, yeah. I do, too. But part of me is absolutely APPALLED that people could look at an event, recognize that it leaves a portion of breastfeeding moms out, and still say “hey! looks good to me! Yeah, too bad for you… but whatever.”

And, you know what? I’ll say it. Exclusively pumping is harder than nursing full time and it’s harder than pumping part-time because of work. It’s hard. It’s freaking hard. It’s hard to maintain a milk supply with just a pump and your hands. A baby is so much more efficient at milk removal… and efficient milk removal is what keeps supply up. Consistently leave some milk behind, and you tell your body it doesn’t need to make as much. It’s a constant battle. And increasing supply as baby grows? Happens invisibly when you nurse – baby takes care of it. When you pump? Not so invisible.  Pumping hurts. My boobs hurt almost all the time.   Pumping takes time. So. Much. Time. Yes, nursing does, too, but when you’re nursing you’re also bonding with your baby. You’re holding your baby. You’re playing with his or her fingers or toes or stroking his or her hair. Not so much with pumping. When you’re pumping you’re NOT bonding with your baby. You, by necessity, try to get your baby to stay happy while you move some distance away to pump. Or you try to pump with baby on your lap, getting tangled in tubes and pulling on/kicking the flanges (see “pumping hurts”). And after you’re done pumping, you still have to feed the baby. And then you have to wash pump parts and bottles. It takes at least twice as much time to EP as it does to nurse. (I average 6 hours a day actually pumping, and haven’t tallied time spent feeding or washing bottles.)     Pumping is not portable. You can nurse a baby anywhere (for example, at an event like Big Latch On). You can’t pump anywhere. You need electricity. (yes, there are battery packs, but they’re almost universally terrible.) Plus, you have to haul a sizeable bag around with you, in addition to the baby and diaper bag. And you have to worry about storing the pumped milk. Oh, and about storing the milk you brought along for the baby to eat. And if you feed through a tube, you also have to worry about bringing tube supplies with you.

It’s harder. It just is.

Then to have big events like this blowing off moms who EP… it hurts. And then to have people I know recognize that this is happening and say “hey, yeah…. but I like it anyway…”  ouch.

Kidney Unit for Homeschool

Our first science unit for 3rd grade was a unit on Kidneys. I usually ask Wally what he wants to learn about for Science, and he usually chooses constellations and robots. Every time I ask. Same thing. This year, he added geology. And I added kidneys.

We made an artificial kidney (or so said the kit I bought – I would call it mini dialysis machine) and we dissected a real kidney. It was fun. There were pictures of people peeing. Bonus learning: do not eat or drink science chemicals.

If you want to read more, here’s the link: http://thefamilyschool.wordpress.com/2012/09/03/kidney-unit/