Clinic Appointment and The Diaper Question

We had a clinic appointment on Friday. It marked a few records for us. Longest length of time between drives to Iowa City since Teddy was born. Almost 4 whole weeks.  And first drive to Iowa City that I wasn’t anxious. I was feeling pretty confident. His labs have been so stable, and he’s been growing so well… I just wasn’t worried.

And then I was kind of worried that I wasn’t worried. Because it’s always when you’re not expecting it that the other shoe plows into your head.

But the visit went well. There was some sort of student nurse in there this time. She did all of our pre-doctor visit questions, like you get at the pediatrician, but we’ve never had at clinic appointments with Dr. Jetton. It just made the whole appointment odd. After the nurse went through everything, then Dr. Jetton came in, and the nurse  basically repeated everything I had said with me standing there, awkwardly listening while they talked about me and Teddy and I’m all “hey, guys, I can totally hear you.”

But it was fine. I told them that I’d been doing blenderized feeds with Teddy and reducing the amount of breastmilk he gets and it was really a nonissue and I felt silly for worrying about it. He’s been gaining weight like a champ and his labs are excellent (for the most part, I mean, they’re a little wonky with various things getting too high or too low, but for a kid with kidney failure who’s not on dialysis any more… they’re awesome).

So the funny moment of the visit. Nurse asks me how many wet diapers he has in a day.

Common question. And also kind of stupid.

Because it really depends, doesn’t it? NOT on how much the kid is peeing. But on how often you change their diaper. Not every diaper equals one pee. Some diapers equal a LOT of pees. And Teddy’s pee volume per pee varies quite a bit, and his timing between pees varies a lot, as well. It’s just not that straightforward.

Also, I don’t count. For the love of all things holy, I have a FEW things going on that are more pressing and important than counting diapers every day. I’ve never been good at the counting diapers game. When he was a newborn and we were watching him really closely, yeah. I kept it in an app on my phone. I still have that app. I don’t use it for diapers. I feel like I have a general sense of if he’s peeing about the same, and that’s good enough for me.

Last, I like naked babies. I think babies like to be naked. Plus, Teddy’s got some time to make up. All those months when he couldn’t be naked, now he can. And with his vomiting (3-8 times daily), sometimes I just get tired of putting clothes back on him. He’s right now, laying on the floor playing, naked as the day he was born. Been naked since I threw him in the bath to wash the paint off of him. (yes.) (and, mind you, I don’t take my ability to do that lightly. He’s only been able to take baths since November.)

So, the conversation:

How many wet diapers does he have in a day?

— hmmm. I don’t know.

Could you venture a guess?

— ummm. Not really. I honestly have no idea. (and this is true. I could not venture a guess. It could be 4 as easily as it could be 10.)

Like, do you think it’s 6? or 8? or 10?

— I really honestly don’t know.

So… do you have any idea?

 

What does she think I’m going to say at that point? Oh, yeah, ok, I was lying before. It’s 7. I honestly have no idea. I don’t want to just throw out a number because I’m learning that things around that hospital never die. You say something one time and it’s in the records forever. I’m not going to have them with “8” diapers in his file if it’s actually, I don’t know, 5.

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Transplant List

Well, Teddy was presented to the Transplant Team today (well, his case was, anyway) and they approved him for transplant! Pending a few things:

  • 9.5 kilos in weight (as of this morning, he was 9.2)
  • Catch up on vaccinations (he just needs the MMR and I think he’s all set. Scheduled to get that 2/18.)

As of today, he is ON the transplant waiting list, but he will remain inactive until the above two items are completed.

Teddy still needs to finish a boatload of lab work. They’ve been portioning it out so we do a little each time he’s having blood drawn – his regular labs sometimes nearly max out his maximum amount that can be withdrawn, so that doesn’t give us a whole lot of room for other labwork. The Transplant Coordinator said they currently have them scheduled out until June, lol. But she also said that we would NOT let that hold us up – once he reaches his goal weight, we might start packing them in faster. I can certainly be taking him in locally to do labs more often, and for the ones that have to be done in Iowa City, we can always drive over.

And they can now start talking to our potential donors. So far, we have two donor packets turned in, and they’ll start on the process of screening them now. Evidently, that shouldn’t take long, but I’m not entirely certain what all is involved. One of our potential donors has been researching her little heart out, though. 🙂

We never really thought the outcome would be any different, but it was good to hear it.

Teddy Summary

Someone sent me an email, the gist of which was – I’m new to following Teddy, could you give me a summary of what’s going on with him?

haha.

I said OK, sure, I’ll put it up on the blog.

Here is a current diagnosis list

Vesicoureteric reflux  (urine flows back from his bladder to his kidneys, VUR) (Teddy has stage 4 reflux on one side, and 5 on the other. That’s the worst it can be, and then one step down from the worst. His ureters are large and twisty, rather than narrow and straight. Technically, it’s called hydroureter.)
Reflux nephropathy (kidneys damaged from the VUR)
UPJ obstruction (the kidney that isn’t too small had an obstruction at its outlet, which was fixed with T’s first surgery when he was 8 days old.)
Congenital renal dysplasia (one kidney is small and underdeveloped)
Chronic Kidney Disease, Stage V (this is the big “what’s wrong.” Everything else is either what caused this or what is caused by this. This is also known as kidney failure)
Premature Birth (36 weeks, induced for lack of fluid)
Anemia of chronic kidney failure (his kidneys don’t make the hormone that tells your body to make red blood cells)
Feeding by G-Tube (he is 100% tube fed)
Low Gammaglobulin Level (we’re still uncertain what this means)
IgA deficiency (though this is on his diagnosis list, I’m not sure if it’s true.)
High Blood Pressure (kidneys regulate blood pressure, and T was diagnosed with hypertension when he was something like 6 months old)
Hearing Loss (this has been resolved with the tubes)
Vomiting (ha ha ha)
All sorts of hyper- and hypo- things from his labs. (phosphate, calcium, etc)

 

Here are the surgeries he’s had

12/4/11 Left dismembered pyeloplasty with placement of percutaneous nephrostomy tube and circumcision.

12/7/11 Broviac placement; PD catheter placement
12/21/11 Broviac replacement (malpositioned)
2/2/12 G-tube placement, open procedure, Mic-key button
3/2 Broviac removal (infection)
3/7 Bard PowerPort placement
3/30 PowerPort replaced (malpositioned), PD Catheter replaced (malpositioned)
8/10 Tubes
9/14 PD Cath replaced
10/8 PD Cath revised, tacked down. Port removed.
11/5 PD Cath replaced.
11/14 PC Cath removed

12 surgeries before he turned 1.

Hospital Admissions:

11/26-11/29: birth (4)
3 days at home
12/2-12/23: NICU (22 days)
40 days at home
2/1-2/9: Gtube (9 days)
16 days at home
2/26-3/9: Broviac infection (13)
16 days at home
3/26-4/6: dehydration (12)
95 days at home
7/11-7/17: line infection  (enterococcus) (7)
25 days at home
8/12-8/13: pre-surg, cancelled for cdiff  (2)
22 days at home
9/5-9/18: line infection  (enterococcus and ascintobacter), PD cath replacement  (14)
13 days at home
10/2-10/13: line infection (ascintobacter), port removal, PD cath replacement  (12)
19 days at home
11/3-11/15: dehydration, then catheter replacement, then fungal peritonitis (Candida Parapsilosis), then cath removal. (13)
69 days at home

 

He’s had three bouts with C-Diff, two IVIG infusions, some 3-4 iron infusions.

Last time I saw a number, his estimated GFR (a measure of kidney function) was 8 (that’s pretty low).

That’s it in a nutshell. Happy to answer questions.

Feeding Teddy part 2

You may recall my experiencing some level of frustration with our nutritionist over Teddy’s diet. Add formula. Switch to formula. Formula, formula, formula. What about food, since he’s certainly old enough for food? Sure, I can feed him food orally, but anything he eats orally is just “extra” on top of his minimum amount of breastmilk. We don’t count it.  And when I asked over and over about putting food thru the tube, the answer was somewhat the same. First, that’s crazy and second, sure, you can put some jarred baby food through his tube, she supposed, but it would be extra. It wouldn’t count.

Now, I love pumping. (ha. hahahahahahahaha.) Ok, I’m happy to pump for my Teddy Bear. Willing, at least. But I’m not going to do this forever. Also, I want Teddy to be treated like a normal kid as much as possible. And normal 1 year olds are consuming food. Whether he eats orally or not isn’t relevant. I want to move him to a blenderized whole foods diet for his daytime feeds.

I’d prefer to do this with the supervision and approval (and maybe even help?) of our nutritionist. And even though the first nutritionist moved and we have a new one, it doesn’t seem that I’m really going to get the input that I was looking for. And I got tired of waiting. I pushed on this for over 3 months. Since the day I first syringed some peas into his tube in the hospital. (ok, he was on dialysis, manual passes, and we had largely finished our training, so that would put it at… Octoberish.)

So whatever. I’ll do it without professional help.

I am not an idiot and I have managed to a) keep Teddy as healthy as can be expected  b) not kill my other two kids  c) never poison anyone. I made myself an absolutely kick ass spreadsheet (which I have tinkered with endlessly – I heart spreadsheets). I’ve come up with a bizarrely wide variety of recipes. I’m having fun.

I spent the time between October and the end of 2012 introducing Teddy to various foods one at a time like you do with regular babies, and now I’m making blends, while still introducing new foods.

I started with replacing the calories, fat, protein, and general nutritional profile of 1/8 of his daily breastmilk intake with food blends. That went pretty well.  In December, the nutritionist wanted me to give him an extra 100-200 calories every day, as well. She suggested meat, though since we had JUST cut down his protein supplement because his BUN was reaching unacceptable levels, I decided to just stick with coconut oil for an extra 120 calories every day (per T) (and no potassium).

Then I got mastitis and my supply TANKED and I got a little desperate and I bumped him to 1/4 of his daily calories coming from food. On the same day that I tried a new blend with chicken (a new food) and oatmeal (which I was iffy on whether he tolerates it). Idiotic, yes. Desperate, remember? He puked all day. He stopped pooping. His blood pressure went up. I declared myself a failure. Vomiting with kidney kids can quickly get serious, because they dehydrate so easily, so I was genuinely worried that I had actually managed to screw him up and kill off his kidney and we’d end up on hemodialysis because I was an idiot.

I backed off, moved away from chicken and oatmeal, and went back to 1/8. He pooped again a few days later, showed a FANTASTIC weight gain, and his labs on the 31st looked great. So I didn’t screw him up too terribly much.

I had PLANNED to tell everyone what I had been doing at our appt on the 31st. And then I just didn’t. I kind of just didn’t (a bit like Cinderella in Into the Woods, I decided not to decide), and I kind of decided to wait until we had a bit more experience – and success – under our belts.

Fast forward to present day, I’m regularly doing 1/4 of his daily totals as BD (half of his daytime intake). I want to move him to all breastmilk overnights and all food days, but I’m not going to rush it and I’m not going to go there without approval from our team. We’re going to hold steady where we are and continue to add more foods to his diet to give him a better nutrient profile.

Next week, I’m going to think about switching from my current method (3-4 different blends each week, switching daily) to just making one large and full of goodness blend and giving him the same thing every day. Ultimately, he’ll get just as much variety, without my having to make so many different recipes each week.

Because he can’t tolerate bolus feeds, I make Teddy’s blends in our BlendTec and I make them VERY smooth and runnier than I would if I were pushing them in. (“pushing them in” = using a syringe and pushing food into his tube.) I modify his bags following the instructions here, though I don’t use the gravity set up, I actually just use his pump. The new nutritionist was telling me he’d HAVE to tolerate bolus feeds since you can’t do BD through the pump, but that’s really not true at all. Even the instructions that came with the pump talk about how to do BD with the pump, and the Food Safety instructions she gave me talked about it, too. Just use an ice pack to keep it cool, and you’re good.

Re, our first nutritionist. Honestly, the more I think about it, the madder I am that I wasn’t more aggressive with her when Teddy was still nursing a little. I think it was ultimately a losing battle, but our nutritionist certainly didn’t help, and almost certainly hindered. Anything he nursed was “extra” and didn’t count towards his daily totals. So I had to stuff him with more breastmilk than any other kid his size would have ever eaten voluntarily, and then if he wanted to nurse on top of that, it was fine. Yeah – like he was going to want to nurse on a full stomach! Ridiculous. I mean, seriously. You could not have PLANNED to sabotage a breastfeeding relationship any more thoroughly if you were trying.

No, you don’t.

I’m not into those ridiculous lists of “10 things to never say to…” whomever. They’re ridiculous. Most people who say stupid things are just not thinking, or they mean well, and they’re not trying to be offensive and hurtful… and those who are can’t be changed with a Top Ten List anyway. For the most part, I think people need to grow a thicker skin. And that includes me. I try not to assume that people are being rude, hurtful, or offensive on purpose, and I try to remember that even people who are awkwardly making me feel awful usually are trying to do the opposite.

One of the few things that really, really gets me going, though, is “I know what you’re going through.” There’s a small group of people who can honestly say that they do. And a slightly larger group of people who can actually come close. But if you’re not the parent of a child who was born with a serious medical condition involving one of his major body systems not working… then you don’t know. And to suggest that you do is ridiculous and stupid.

I have not had very many people say this to me, fortunately, though friends of mine have. (I’ve even had friends who have had people suggest they know what it’s like to raise a baby with kidney failure because their dog had kidney failure. Soooo not the same.)

Until Friday. A gentleman at the previously-mentioned nonprofit COTA, in response to my statement: “I hope COTA will take care to provide accurate information to people who call with questions in the future, because families with very sick little kids who need transplants just generally don’t have the energy or time to deal with extra crap like this,” said “I know exactly what it’s like, my dad needed a kidney transplant.”

To quote the Doctor, “What? WHAT?”

My mom had Type 1 diabetes. She struggled to maintain her kidney function for decades, but it was a losing battle. She eventually had to start dialysis when Wally was little, and I was her partner and learned how to do her PD (both manual exchanges, as well as with the machine) right along with her. She could have been placed on the transplant list, but opted not to, as she couldn’t imagine why she should get a kidney instead of someone younger, someone who needed that kidney to see their kids grow up, as she often wondered if she’d see us grow up. She ended up dying of a series of heart attacks in 2008.

So, I know what THAT is like.

(Incidentally, though it’s not that relevant, my dad had inoperable liver cancer and died in 1999. So I know what that is like, too. What I don’t know is what it’s like to have a parent die of old age.)

Let me assure you. Having a parent in kidney failure is nothing – NOTHING – like having your newborn diagnosed with kidney failure. An adult learning to do their own dialysis is nothing like learning how to do dialysis on your 9 month old. Accompanying a parent to surgery is nothing at all compared to handing over your baby to a surgeon 12 times in his first year. Driving your mother to doctor’s appointments does not compare in any way to spending 1/3 of your baby’s first year of life in the hospital, away from your other two young kids. A grown adult getting labs does not in any way compare with a BABY having to get labs drawn. Giving an injection to your parent is COMPLETELY different from giving an injection to your infant.

The experiences are not comparable. At all.

And the reality of kidney disease isn’t really that comparable, either. Adults don’t have to deal with growth issues. They can usually still manage to eat by mouth, even if they don’t feel that great. Most adults with kidney disease can do their own self-care. They can do their own meds. They can do their own blood pressures, their own dialysis care, their own feedings, their own everything.  The same is not true of babies or kids. Babies or kids have to worry about physically growing. They often have oral issues and can’t or don’t eat orally. They rely 100% on adults to do their meds, blood pressures, dialysis, weight checks, etc.

So to say that, because an adult you know had a similar condition, you know what it is like to have a baby with that same condition is, I’m sorry, absolute bullcrap.

Unless you have been the parent of an infant born with a serious, lifelong medical condition…you just don’t know. You can’t know. And to say you do know is extremely offensive.

Steer Clear of COTA

OK, so after months of effort in attempting to set up a campaign with COTA, I am officially closing our campaign. COTA is not interested in working with transplant families. They are not interested in apologizing when they mess up.

I asked before we got started if I could keep Teddy’s blog and was told yes. After we signed our agreement with them (which did NOT mention blogs), they said we could not. (they want me to move my writing to their website, which I’m not about to do for several reasons.) My last conversation with them, they said they’d see what they could do. The phone call I got today started with “have you had a chance to think about that any more?” Um… No. I kindly explained to him that I’m sorry if the impression he got of my conversation with the last guy was that I was going to think about it, but how we actually left the conversation was that I was done thinking and he was going to see what he could do. He then told me I probably misinterpreted what I was told originally. Because, you know, “yes” is a very easy thing to misinterpret.

He said that they could not possibly monitor blogs that were on outside servers, but  maintained that they read all of the blogs on their own servers. I mentioned to him the possibility of using a blog reader like Google Reader, to pull all of their family blogs into their feed – it wouldn’t be markedly different from what they’re doing now. Oh, well, it sure would, because they have 38,000 families!! (and so what? 38,000 blogs on your own server or 38,000 blogs in your blog reader. Not much different.) He would not answer if I could blog on my page but feed it to theirs or vice versa. Nobody’s ever asked that before… and apparently, finding an answer wasn’t a high priority.

I mentioned that it had taken a long time to find someone who would run the campaign because of all of their requirements. He said he had no idea why it would take that long. I said, gosh, I don’t have a cadre of friends with time on their hands. Everyone has lives. They’re busy. They’re not skilled with fundraising. A good chunk of my fellow kidney moms have the SAME problem – people are just busy. Particularly when you narrow it down to just people who live geographically close to us – I’m friends with mostly people with young kids. Which you would expect, seeing as how I also have young kids. Us people with young kids tend to gravitate towards each other.

He said the only conditions I could keep the blog were if I didn’t mention fundraising at all. I said I didn’t think there was much point to doing a fundraising campaign if I couldn’t ever mention it. And then he told me I was not what COTA was looking for. Yes, he fired me from COTA.

He also continued to maintain that IRS regulations dictated this. I asked, as past president of a 501(c)3 myself, if he could give me that reference in the IRS regulations because I was afraid that our organiation might be running afoul of that reg and it turns out, oh, yeah, it’s NOT an actual regulation. No kidding. But it comes from 20 years of doing this with a clean bill from the IRS. Oh, ok, yes, let me bow down to your 20 years of experience with the IRS. I think SDM’s been at it for over 10 years now.

SO… transplant families. Steer clear of COTA. (And, actually, I’ve had several people mention that they’d had trouble with COTA and had to close campaigns early, as well, and I didn’t listen.)

The gentleman I spoke with today was using a polite tone of voice, but he wasn’t listening, and he was very condescending. He had me on speakerphone and didn’t say who else was in the room, which is rude.

 

If you already donated to COTA, they will be giving us our money. If you were thinking about donating to COTA, please don’t. Teddy’s page at Fundraise is still open and you may use that. I’ll be updating the links in the sidebar, as well. Glad I wasted time taking down the Fundraise link and putting up COTA. Jerks.

Growth Hormone

The months of September through November are somewhat of a blur for me. I bizarrely keep track of time these days by which hospital admission we were on or recently discharged from, and there were so many during that time, everything gets mixed up in my head. So I don’t remember when exactly, but some time, Teddy’s nephrologist mentioned starting growth hormone injections when he turned 1. Some of the moms in my Facebook kidney group give their kids HGH shots, and I had tentatively decided, in my natural parenting mindset, that we were not going to do HGH. That ultimately, things like looks and how tall someone is don’t matter. That he would be happy and healthy regardless of his height.

And all that is true.

I tend to spend a lot of my downtime on hospital stays doing research, so I dived into research on HGH for infants with kidney failure. And I will say that I surprised myself when I ultimately decided that it would be the best thing for him.

Not just to grow taller. (Frankly, if he stays where he is on the growth chart, which is well below the 2% line, he’ll probably grow to be as tall as his grandparents and perhaps even reach his aunts. I didn’t marry into a tall family.) But to make room for that new kidney. (Of course, at the time, I wasn’t expecting to be thinking of transplant until quite a bit later, so I was thinking the HGH would have several months to kick in.) And also to replace something his body’s not making or using well.

I would be against HGH if it was just “hey, he needs to be taller.” But I’m surprisingly OK with it when we’re using it to bring his body systems back to normal. I’m not trying to make him taller, I’m trying to give his body something it would have or use appropriately if it were functioning normally. Just as I give him aranesp to replace another hormone his body’s not making (kidneys make a hormone that tells your body to make red blood cells, but kidneys that don’t work don’t make this hormone, so we give it to him as an injection).

I already give him a weekly Aranesp shot, and though that’s not awesome, it does go ok. HGH is a daily shot, though, and I really was not looking forward to that aspect of it. However, I’ve been doing it for a week now, and it’s really not a big deal. It is, however, just One More Thing.

It comes in this little pen deal, rather than a vial and syringes like the aranesp. I’m not crazy about the pen, but I DO love the needles – they’re SO LITTLE. The first injection I gave Teddy, I practically jabbed that thing clear through him, because I used the same amount of force I use with the aranesp, but the norditropin pen just glides right in. The sucky part is holding it in and counting to 6 before pulling it out, because of course he’s a baby, and he’s not exactly sitting still for me. But the awesome part is that by the time I’ve set the pen down so I can pick him up, he’s largely done crying.

The worst part is when he sees I’ve gotten out the alcohol wipes, to be honest. Poor kid. Just like the worst part of labs for him isn’t the poke (usually), it’s the tourniquet.

 

So, here’s a brief look at the research. As with everything related to kids (particularly little kids) with CKD stage 5, there’s not a whole lot out there. The NKF KDOQI guidelines are all based on expert opinion, not necessarily actual research, which is a little unreassuring, but there’s just not that many little kids out there with kidney failure on which to do tons of research. It’s a frustrating reality that I run into often.

http://www.aakp.org/aakp-library/Growth-Hormone/

…a substantial percentage of patients (as many as 60 percent in one study) who develop end-stage renal disease (ESRD) during childhood, develop marked short stature and attain a final adult height at or below the third percentile on a standard growth chart. Although a variety of factors play a role in the varying degrees of growth impairment seen in children with renal disease, the patient’s age at the onset of renal insufficiency can have a significant impact. It is well recognized the younger the age of the child at the onset of renal disease, the more severe the growth impairment tends to be. While complications such as malnutrition, renal osteodystrophy (bone disease) and acidosis  may also contribute to the poor growth rates and need to be treated aggressively in all patients, abnormalities related to the function of growth hormone and related substances exert their influence during mid-childhood (age three to puberty) and have the most profound influence on growth delay in this population.

Growth hormone (GH) is synthesized in the pituitary gland and indirectly promotes the growth of a child by stimulating the production of insulin-like growth factor 1 (IGF-1). IGF-1, which directly promotes cell growth, is produced in the liver, growth cartilage and many other tissues. Its production is in part dependent on an adequate dietary protein and calorie intake in addition to the presence of GH. Paradoxically, many children with renal disease and growth retardation have normal or elevated levels of GH in their blood. In contrast, the levels of IGF-1 that are needed to stimulate growth are low. The low levels appear to be due to the presence of proteins in the blood that are normally removed from the body in urine, but accumulate in kidney failure. These proteins bind to and reduce the function of IGF-1 which results in the suboptimal height velocity characteristic of children with impaired kidney function.

The article makes the point also that a lot of parents and patients turn down HGH therapy, only to desire it later on, when it’s too late. The time to administer HGH is before transplant, ideally, and while the child is still young enough to have a lot of growth potential.

Does HGH work, and does it have negative side effects in this population?

http://www.ncbi.nlm.nih.gov/pubmed/16856001

Fifteen RCTs (629 children) were identified. Treatment with rhGH (28 IU/m(2)/wk) resulted in a significant increase in height standard deviation score (SDS) at one year (MD 0.78 SDS, 95% CI 0.52 to 1.04), and a significant increase in height velocity at six months (MD 2.85 cm/6 mo, 95%CI 2.22 to 3.48) and one year (MD 3.80 cm/y, 95%CI 3.20 to 4.39). Compared to the 14 IU/m(2)/wk group, there was a 1.34 cm/y (0.55 to 2.13) increase in height velocity in the 28 IU/m(2)/wk group. The frequency of reported side effects of rhGH were similar to that of the control group.

Most of the studies I found about HGH and kids with renal failure suggested that there were some things to watch for re: concerning side effects, but that side effects were uncommon and similar to those experienced in a control group (of kids not receiving HGH).