Our Teddy Bear's Journey

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

So. Our evaluation day at CDD

Let me start by saying that we are 100% finished with CDD. If I could convince two insurance companies to refuse to pay for our visit, I would. There were some positives to the day, but mostly it was a colossal waste of time and energy.

We started off the day with Dr Linn-Dyken.She mostly let her resident handle our appointment and came in to talk briefly. She did not discuss any of my actual concerns, nor did she discuss any potential diagnoses. But she did end up diagnosing him with “inattention,” “hyperactivity,” and “impulsiveness.”  Not ADHD, no. Just the three components of ADHD. More on that later.

We also saw an OT, who was great. After learning that we homeschool, she gave me lots of great ideas on things we could work on at home. I don’t think she ended up having time to do all the evaluations she planned to do, but was able to tell me that Teddy’s fine motor skills are stuck at about 18 month skill level. Which was hard to hear, since it used to be that fine motor skills were all T had going for him. He had 18 month level fine motor skills when he was 12 months old. So… sigh.

Next we saw an SLP. That appointment was great. She had two students with her, and I decided immediately that every appointment ever needs two graduate students. They skipped an articulation test since we have that under control already, and she did a language test. Which he bombed. And I know that these tests aren’t pass/fail. But wow. The thing is, I don’t think he has a limited vocabulary… but he seems to have trouble understanding us, and he seems to have trouble  using his words appropriately. She also diagnosed him with cluttering, which is a rare speech disorder that combines some stuttering with a fast rate of talking and mumbling. She sent us over to some cluttering specialists at Wendell Johnson next door. (We just had that appointment this week – he does NOT have cluttering.)

Last we saw two PTs. He passed that eval, barely squeaking in at the lowest possible score you can get and still be in the normal range. Come back in a year and we’ll see how he’s doing.

When we got home, I sent a message through MyChart (the way we’re supposed to do it) to ask some follow-up questions.  a) so… nobody ever addressed my concerns about sleep. Isn’t the developmental delay related to lack of good sleep? Isn’t there a sleep specialist at CDD we could see?    b) his chart says “neurocognitive deficit,” I had asked if he has cognitive issues and nobody addressed this, and also his chart at one time said “abnormal brain function,” what does that mean?   c) why does he have a diagnosis of all of the components of ADHD but not ADHD?

Two weeks later, no response. So I sent another message, asking if they had received the first. They had. Another week, another reminder from me. Another week, and I called patient relations and got them involved. Finally, a nurse called me to let me know that I ha already received a reply. Um…. no. Then she said that she must have meant that the answers were already in her notes from his appointment.  Um… no. Then she theorized on what the answers to my questions might be. um…. not acceptable. Then she said she’d ask the doctor and let me know.

This morning, I had a response in my MyChart inbox.  a) she didn’t think the sleep issues were important since we homeschool and he doesn’t have to be anywhere at any specific time. (oh… ok…. so getting small amounts of poor sleep is only important if you go away for school, I get it. Also, who cares about mom, who has to stay up with him all night and is still expected to give him the right doses of meds during the day.) But I can give him melatonin. That’s it. Oh, better, turns out, Dr. Linn-Dyken IS the sleep specialist.    b) she doesn’t know     c) no response, but her nurse had theorized that it was because he is homeschooled. (Which is why our oldest was not able to get a diagnosis of anything at all from them, as well – he is homeschooled. As though educational setting changes who you are.)

So they can all kiss my white behind. I’m writing a letter to the director of cdd, patient relations, and also the head of peds nephrology.

The one thing I was excited about coming out of our day was a therapy that they recommended called Parent Child Interaction Therapy. They said it could help him with his anxiety and many of his poor behaviors. I was jazzed. Until I read about it. It seems mostly to be something a court orders you to do because you’re a shitty parent. More telling: most of the places that offer this therapy are crisis centers (the youth shelter, for example). I did find a therapy office that isn’t a crisis center that offers it, and we’re on their waiting list but they estimated it would be many, many months. So…

  • I still don’t have a handle on the sleep issue and have no idea where to turn at this point. I asked Dr. Linn Dyken for a recommendation for someone else since we’re clearly not returning to her.
  • I don’t know where to go for more information on any cognitive issues Teddy may have.
  • Nobody seems to be able to tell us more about whether he does or doesn’t have expressive/receptive language disorder and what that means and what we do about it.
  • I don’t know what abnormal brain function means.
  • I don’t know where to go from here.
  • This sucks.
  • CDD sucks.
  • Don’t ever ever go there.
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Been a long time.

Sleep Study, check. (Does have Obstructive Sleep Apnea not caused by tonsils or adenoids. Decided to try respositioning him during sleep first before considering surgery or cpap. Haven’t actually done this, though, because sleep.)

Sleep. Awful still. Just… when I say awful, picture super awful. Picture complaining about your newborn, times 5 years. He doesn’t go to sleep. Even when he’s tired and wants to sleep, he can’t. Then once he is asleep, he wakes easily. And though he’s not an early riser, he IS an early riser when you consider what time he went to sleep.

Evaluations at CDD. Check. This will be its own post. Suffice to say for now, that was a rough day. For me. But even though our appointments were THREE WEEKS AGO, I’m still waiting for some reports, diagnoses, and answers to questions. Because CDD staff evidently just cannot be bothered. I hate them with the white hot heat of a thousand suns.

The new drug for motility, Peracitin, is a MIRACLE DRUG. It’s my best friend forever. Me + Peracitin = BFF. He doesn’t vomit any more. I mean, he still gags on food and vomits, but that’s a mechanical issue, and it makes sense. There’s an obvious cause. He doesn’t do the random vomiting.

Allergy testing. Teddy went for allergy testing and we’re still waiting on results. He had a big reaction to something and ped wanted us to get it checked out.

Audiology. Teddy still can’t pass hearing tests. We took him in in August to the school a few times and the first time, he failed big-time. Went to ped to check for fluid in ears – there was some, but there was also a TON of earwax. Washed out the earwax, gave it a few weeks for the fluid to drain, checked on fluid again, it was mostly gone, did another hearing test, still didn’t pass. Didn’t not pass by much, but barely failing is still not passing. Referred to audiology. Audiology… sigh. He passed the mechanical tests – the “is your eardrum vibrating” and “are the cili in your cochlea waving around” ones (which is where he’s failed before). But he didn’t pass the actual hearing test part. But he obviously wasn’t understanding the instructions, and she stuck with it for far longer than I would have before trying a different method. The other method could have worked, but by then, he was beyond ready to be done. So he didn’t respond to several frequencies, but it remains to be seen whether he didn’t respond because he didn’t hear them, or he didn’t respond because he was done cooperating. We’re supposed to go back in 6 months, as though he might be more cooperative at that time. (yeah, it’s ok, you can laugh.)

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Iowa City Update

Well…. we had a kind of eventful day of appointments, but one I feel good about.

  1. Another evaluation at CDD with psych (who I think are like the gatekeepers there). Teddy was evaluated last fall just as a routine thing they do with transplant kids (because studies show that kids born with kidney failure have a whole host of other issues with growth, development, etc.). He was at that time developmentally delayed, and they recommended therapy, but wouldn’t say precisely WHAT for therapy, and since he’s already getting speech and OT, we just went on with our lives. But since then, I’ve gotten concerned about several things, and in trying to track down what’s going on, decided he needed to be seen again. And so the outcome of last week’s appointment was that they feel he’s even further behind that he was (I concur) and additionally has more problems they either hadn’t mentioned or hadn’t noticed last fall (I concur). He has a full day scheduled in a few months to see OT, PT, ST, Developmental Ped, Psych again, and who knows who else and we’ll see what they have to say. We have a good idea what they’re going to say, but maybe we’ll be surprised. It was nice to have my concerns validated and taken seriously, even if I don’t actually personally like the psych lady at CDD all that much.

    Also, Teddy is seriously a riot. He needs like a half hour with any new person to get out all of his verbal diarrhea. He really needs to tell you basically every random thought that pops into his head. After that, he’s ready to settle down with you. Before that, he’s just not going to move to your agenda. Period. Also, most of his answers make perfect sense IF YOU KNOW HIM. “What is red?”  “Lightning McQueen.”  Yep. He’s not going to say “red is a color.”   “Who wears a crown?”  “King Bob.”  King Bob DOES in fact wear a crown.   “What is this? (picture of a teddy bear)”  “Golden Freddy.”  (A character from Five Nights at Freddy’s, a horror game Wally plays and has a plush Freddie from.)  Dude, you can’t count those as wrong answers!!

  2. Kidney is rock solid. Renal-wise, everything looks great.
  3. Nephrologist wants to switch Teddy from Imuran back to Cellcept. Cellcept/Prograf is the gold standard of immune suppression in peds renal. Cellcept also can really wreck your GI system. Some kids just can’t tolerate it. Teddy was one of those kids. BUT kids often outgrow that intolerance, so trying a switch makes sense. But she doesn’t want to do it until he stops vomiting.

    Fine by me. I’ve been trying to get a doctor on board with figuring out Teddy’s vomiting for a year now. We’ve done all the tests and nobody finds anything, so they all say, “well, maybe he’ll outgrow it.” That’s GI-speak for “we don’t know.” NORMAL kids don’t vomit 3-4/week and even though that’s down from 6-12 times a day… that’s still not 0 times a week. So let’s FIX IT!!

    So the only thing we haven’t tried is something that Chicago GI suggested, which is a new drug for low motility (GI system moving food through too slowly). So we’re going to give it a try. My goal for vomiting meshes together really well with neph’s goal for meds, so I’m in favor. I think she thought I’d resist on the Cellcept, but I really don’t care.

  4. I asked about switching from Prograf to Rapamune. She’s not particularly in favor, but is completely willing to switch if I want to. She doesn’t have a problem with it, just has good reasons for preferring prograf. I think each drug has some serious downsides. It’s like trying to choose between Hillary Clinton and Donald Trump, lol. But there’s no third party candidates out there when it comes to immune suppression.  Prograf has a listed side effect of insomnia. Teddy has insomnia like nobody’s business. I think that’s part of the reason for all the delays. But she wants to make the Cellcept switch first… which I understand… but that means it’ll take a LONG time to get around to the Rapamune.
  5. But that gives us time for a sleep study. Oto suggested we consider a sleep study when he had his last surgery (the trachea scope). I’m ready for it now. Except…now the scheduler says we FIRST have to have a consult with Oto. The same one who ALREADY recommended it to us. I said I’d schedule that consult (which isn’t for 3 months) if they would send the doctor a note and ask her to read his file and make extra double certain that she needs to see us again to recommend a sleep study when she’s already done so one time. Because we’re talking 4 hours of driving and at least 2 hours of waiting room sitting for a 10 minute appointment, and I like that doctor enough to put up with the lengthy waiting room stays, but I don’t think this particular visit is necessary. Plus, For the love of all things holy… 3 months for the consult and how much longer until the sleep study? I need some Fing sleep NOW, people. So does he.
  6. Last, warts. Yeah, I’m losing the battle against the warts. 3 months ago, there were 5. Now there’s 15. Despite my treating them at home. Derm in Iowa City said they could treat them, but we would be just as good seeing a local derm and save us the drive, so we found someone and we’ll see how it goes. (Yeah, warts aren’t a big deal on normal people. But they’re caused by a virus that immune suppressed people can’t clear on their own, so if left untreated, they can get really bad.)
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Feeding Successes

Since my last post on the subject, Teddy has made serious strides in eating successes. One evening at dinner, he sat and ate a half of a chicken tender. Just like he’d always done it. Just like it was no big deal. Boom.

Then a week later, he ate a cheese and turkey sandwich – a) like a sandwich (as in, he picked it up and ate it like you or I would eat a sandwich, vs eating the bread and then maybe the ingredients)  b) all of it – the turkey included. Whoohoo.

Then a week after that, he ate an ENTIRE MEAL. It was a chicken nugget happy meal. 4 nuggets, fries, and drink. All. With his mouth. Since then, he’s eaten a lot of chicken nuggets. 🙂

AND he ate a bite from a cheeseburger.

He still balks at most new foods. He had a near panic attack at feeding therapy this week because there was pasta with sauce on his place.

So… progress.

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Feeding Therapy

This series of pictures was actually only the third time Teddy’s allowed interaction with a meat, and it was pretty awesome.


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Big Trip to Iowa City

I wasn’t really a Big Trip, just the first of its kind. 🙂

Last month, I took all 3 kids for an overnight in Iowa City. Despite tons of calling and begging, the derm only sees patients on X day, and cardio only does the type of appt we need on Y day, and neither party would budge. It didn’t make sense to drive out two days in a row, it didn’t make sense to have Randy miss two days of work because UI couldn’t be a little flexible. So I just took everyone and we made a trip out of it.

We started with Derm bright and early our first day. Eczema looks good, got some clarification on which creams go where and when. Yes, those are warts on his foot. Treat at home with liquid wart remover but if they multiply or don’t go away, call back immediately. Warts are caused by a virus and they can spread quickly in an immune compromised person. As in, he could be covered. The bad news: since the appt, the warts have doubled. We had 5, now he has 10. I’m treating but if we get to the end of the treatment timeline and they’re still multiplying, we’ll have to go back. They said they’d refer us to a peds derm here in town so we don’t have to drive out for treatment. Problem: I don’t think there are any.

Then we hit the hospital playground, the fun deck on 8th floor, the inpatient unit play room, a park in a suburb, and Burger King. And then we drove around for a while. We had been hoping to stay at the Ronald McDonald House, since it’s cheap, but they didn’t have any room, which of course we didn’t find out until 3 pm. 🙂

We ended up staying at our “usual” Iowa City hotel, which has a pool. And we ordered pizza for dinner. And we went to the pool twice. Teddy vomited. Not in the pool, thanks to quick reflexes. Everyone eventually went to sleep. We got checked out without leaving anything behind and got over to cardio just in time. 🙂

Cardio went ok. He had another Echo. Heart looks mostly the same. Since there are no big changes from last year, they expect it’ll largely stay how it is until puberty, when it’ll explode. Just like his kidney. So yay, puberty’s going to be fun.

OK, not really explode. But puberty’s when it’s more likely to get bad faster. So we’ll continue to have annual appointments for a few more years, and if it stays stable, we’ll move to every other year.

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Surgery 16

Today went both better than I thought it would and also more or less exactly as I suspected it would.

For being the first time Teddy’s been NPO for any extended length of time since figuring out that the sensation of hunger IS hunger and is fixed by eating food, he did remarkably well. NPO’s always been pretty easy in the past because, though he might have felt hunger, it was a sensation that meant little to him, and certainly didn’t prompt any action on his part. But he made that connection in the last year and I was expecting today to be worse than it was. He had a few meltdowns about being hungry and wanting snacks, but for the most part, he was pretty distractable and easygoing.

The surgery didn’t really seem like a “surgery” to me – I’ve always defined “surgery” as “some level of sedation plus some level of cutting.” Today was a laryngoscopy and bronchioscopy – plan was to just look, and if she found anything easy to fix, she’d fix it. But evidently because it involves the airway, it is medically considered a surgery. The surgeon (same one who did his tonsils) was very very clear on that, and made sure we understood it was a real surgery, not something to be taken lightly.

The hope was that we’d find a cyst or something in there that was an obvious cause of recurrent croup and she’d clip it off and that would be that. There was a possibility of finding any number of awful things in there. But the odds were on finding basically nothing.

And that’s basically what we found.

His airway looks “angry.” If we hadn’t just done a PH probe and found he doesn’t have reflux, she’d say his airway looks like he has severe reflux. (makes me wonder about the PH probe, but she felt it was reliable. I’m going to talk to GI again, though.)

He has subglottic stenosis. That means that his airway is narrowed below his vocal cords. Stage I, which is a nice stage, all things considered. That means “only slightly narrowed.” We need to remember that for any future intubations, but it shouldn’t cause any big problems. Such as recurrent croup.

She actually took a picture of what’s causing his snoring. I told a friend this afternoon that this is the fun part of being a medical mom. Yeah, I have a picture of “a snore.” He has some floppy skin just above his vocal cords that gets sucked into his vocal cords when he’s not too deeply asleep, but she watched it as he got more deeply asleep with the sedation and it stopped. She listened to my story of his snoring (which had gone away after the tonsils but is back) and said we need to keep an eye on it but unless we notice he’s having apnea, just to monitor. (She said it’s not like he’s going to actually sleep with a cpap on, and though she can probably fix it surgically, that’s an option for if it’s really really bad, and not something she’s eager to do.)

I chatted with her for quite some time. I had forgotten how much I like her, even though her clinic runs SO FAR BEHIND that I’m usually irritated as heck by the time I ever talk to her. 🙂  She shared some research with me (which of course always gets you good marks in my book), shared some things she’s planning to actually research herself that were relevant to what we see with Teddy and she hopes to learn more about things like his angry airway in the next several years. She discussed the fact that her resident challenged her on why we were doing this surgery today, and she really had thought it over again this morning on whether to just cancel the whole thing, but enumerated for me why she decided it was worth going ahead. (and suggested she’d had this conversation with herself the day we scheduled it when she saw him on her schedule…which I appreciated that she was so thoughtful about it.)


But the remarkable moment of the day…

I took Teddy back to the OR like I always do. The anesthesiologist was almost EAGER to have me go. It wasn’t, “oh, I suppose” but rather a very swift, “Definitely! Here’s an outfit for you.”  When I got back to the room (the ambulatory surgery center has you wait in the pre-op room while your patient is in the OR, and then they also recover in the same room), I told the nurse that he would probably wake up really upset and angry. Because he ALWAYS HAS. Even the relatively minor sedation for the GI scopes. Just pissed. And I like to warn them because sometimes they’re kind of surprised.

I ended up telling like four people this.

And then eventually they brought him back to the room, cool as a cucumber. Completely chill. First stage recovery nurse said he woke up, looked around, rolled over, took some water, and just laid there looking around.


If I had to guess I’d say he was doing the “compliant patient” routine he sometimes does when he’s just unable to deal. He submits to whatever, but it’s like he goes somewhere else in his head. It breaks my heart, but if he can make that work for him… hey, whatever. But he stayed pretty calm the whole time. Snuggled next to me in the chair for a while. Didn’t want to leave when it was time to go. 🙂  So maybe he just was calm? Nurse also suggested that the type of anesthesia might make a difference, and if he has future surgeries to be sure to note for them that this one was a much easier recovery.

So… no answers. But as frustrating as no answers is, it is better than definite bad answers. And with this, we’ve not only ruled out the easy/small stuff, but we’ve ruled out a lot of big/scary stuff, too. No answers on the croup, so no ability to predict if it’s going to continue to be a problem or if he’s going to outgrow it… which leaves me feeling like we can’t ever sleep more than a few minutes from a hospital… but at least there’s nothing horrible going on in there.

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Just like Old Times. Sort of.

We saw Otolaryngology yesterday. Yes she does want to scope him. Which I knew she would and I’m not happy but I’m not unhappy. It’s one of those “I don’t want to but it’s probably a good idea” things. Those are a bit harder for me than the “do this or he’ll die” surgeries, though, that’s for sure.

So because of his heart defect, he has to have an in person appointment with anesthesia. It’ll take 45 minutes, they said. I have no idea what they’re going to do. We never had to do it before because we didn’t know about his heart. Harumph.

So, on the schedule between now and April, we have:

  • pre op
  • this procedure
  • post op followup
  • derm appointment
  • transplant clinic
  • Echo and cardiology annual appointment

Yep, 6 trips in  3 months. It’s almost like old times. But it’s still not *every* week, like we did for about 18 months, so it’s hard to complain too much.

But it’s not like old times – before his transplant, he could not be NPO safely. He had to be admitted for an IV if he had to be NPO. This procedure will hopefully be outpatient. 🙂

So they consider it an “operation.” It’s more anesthesia than he gets for GI scopes, more than you get for ear tubes, but not as much as he got for any of the big surgeries. She’ll basically stick a camera down his windpipe and into his bronchial tubes and see what there is to see. If there’s anything obviously wrong that can be fixed easily, she’ll fix it. If there’s anything obviously wrong that can’t be fixed easily, we’ll schedule another OR date and take care of it. Chances are good she’ll find nothing, and I think I offended her when I said that that was what I was expecting… but it’s just that I’m used to doing lots of invasive testing and STILL HAVING NO ANSWERS.

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Well, it’s not reflux

Teddy was admitted for 24 hours right after Christmas for his pH study. They put a fancy tube down his nose all the way to the top of his stomach and it measured if anything was coming back up, and if anything was, whether it was acid.

He was scheduled for sedation for this, despite the fact that the clinic nurse and I had discussed and agreed when it was scheduled that he didn’t need it. So I refused. They balked. They weren’t sure they’d ever placed a pH probe on a 4 year old without sedation. Would the doctor even agree to this? I held fast, and they eventually relented. It was fine, even though the resident who actually placed the probe had so obviously never done it before. He was fine.

It was a super boring stay, but since no doctors really needed to see us for any reason, we didn’t have to hang around our room much. There was a big snow and ice storm so there were hardly any clinic patients walking around, so we ran up and down the deserted hallways. Derm had a billion cancellations so they agreed to see us while we were there about Teddy’s weird skin nonsense. (Folliculitis infected with staph or strep.)


So we got a call a week or so later. It’s not reflux. He has no reflux. At all.

So… the vomiting, the coughing, the gagging, the increase in coughing and gagging in the mornings, the stridor and the croup…  well, we ruled out the easy and obvious cause. We see ENT again on Thursday to discuss next steps, but I’m 99% certain she’s going to recommend scoping his trachea and I don’t wanna. I mean, we’ll do it because that’s the next step, and the only step really, but I don’t wanna.

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Croup Croup Croup Croup Croup

Well, we’re continuing to chip away (or at least TRYING to chip away) at Teddy’s “other” issues. Persistent diarrhea and vomiting have been back-burnered for the time being. 

Next up: croup. Teddy gets croup ridiculously frequently and it’s usually serious enough to require an ER trip – retractions, low o2, inability to lay down… all the symptoms they say “if your kid has one or more of these with croup, go to the ER.” So far, we’ve nailed down only the fact that this shouldn’t be happening. 🙂

Last month, we saw ENT for their thoughts. His trachea is slightly small for his age (or was at the time of his last surgery 2 years ago) but not overly small. Not small enough to be causing this.

ENT thinks it could be 1 of 3 things:
– damage from intubation (though no difficulty has ever been noted with intubating him – but he was last intubated under her supervision so there may be a hint of bias there)
– something growing in there (cyst or nodule)
– damage from reflux

She wanted to scope his trachea but I said, hey let’s talk to GI and pursue the reflux thing first, since that’s easiest and I’m in favor of easy.

Today we saw GI. GI… sort of listened to me, but I think had decided to do a PH Probe even before she walked in, which is fine since that’s basically what I wanted to do anyway, but I guess I thought we’d talk about it a little first. She seemed to think it was significant that we took him off the PPI but he’s had croup both on and off the PPI, and coughing both on and off, and vomiting both on and off. The PPI has never seemed to make a bit of difference, even on a dose 3x as much as you’d typically take. Either it’s not reflux, or the PPI isn’t the right drug for him.

So we’re going to do a Ph Probe, which means a day inpatient. That’ll tell us if he’s still refluxing or not and then we can go from there.

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