I don’t even know where to start. Let’s call this post “We’re missing something.”

We’re missing something.

At least one something.

Here’s a general update:

  • Croup. Teddy continues to get croup monthly. His regular Otolaryngologist decided that he’s above her pay grade at this point, so had us see aerodigestive at UI. (and we want to see aerodigestive at Cincinatti – and I think we’re still headed that direction – but I don’t regret going ahead and seeing them at UI.) That doctor did an in-office scope on Teddy and discovered a few things. a) his left nostril dead ends. That seems like a big thing to miss for 6 years, eh? That’s going to be a new thing to tackle but not just at the moment.   b) his airway is just awful looking. Very angry tissue.  c) he didn’t see any stenosis.

    So what the heck? Now he has no stenosis? Did he outgrow it? Maybe. But there goes the “he has subglottic stenosis so that’s causing the croup” theory.  (which means the “he probably needs surgery to correct this” treatment plan is also out the window for the time being, which makes me happy.)

    He thinks his airway looks like severe reflux. Even though reflux was ruled out by a pH probe. Even though he’s been on reflux meds before with no noticeable difference. Even though, even though, even though. And this isn’t the first time we’ve heard it, and it was even a theory I had. Even after the pH probe (because they aren’t 100%). So I’m on board with this as a working theory. We’re trying a PPI again and we’ll see. He said to do it for 2 months and if he hasn’t had croup in that time, we can figure it’s working, but I’m assuming that we’re also going to do another scope. In the meantime, after 10 days on the PPI, he got croup and ended up back in the hospital, so….

  • Transplant is concerned that he’s getting sick that often – and then I told them that this doesn’t even include when he’s sick and doesn’t get croup. I don’t even keep track of that. We’ve been working with a new therapist for about 8 months now and she said this week that she has not seen him NOT sick – and she comes weekly or every other week. He’s sick ALL THE TIME. People want to know why we never go places and do things, it’s because Teddy’s ALWAYS SICK. They’re concerned, so they had us see immunology. Immunology basically wanted to run a bunch of labs, but based on the labs they’d run the last time they saw him (pre transplant when he kept getting line infections), they had an idea of what they’d see and had worked out a treatment plan that we’d proceed with when the labs came back looking as expected. The labs have come back. They’re not as expected. I don’t have the first idea what they mean, because immunology labs are HARD, man. But some things are WAAAAY of kilter.
  • Genetics. Meanwhile, I requested to see genetics again. Last time we saw them, he had far fewer diagnoses and they were really just looking at liver things, or liver/kidney things, mostly to rule out big things that could affect transplant. They never did any general overview stuff. He has SO MANY diagnoses right now, it’s hard not to wonder if something doesn’t tie a lot of things together. I have a few theories from Dr Google, and I think they’re good theories. We’ll see what they say. Microarray came back normal.
  • Weight/eating. He recently started a new med that has, as a side effect, appetite suppression. He has stopped eating by mouth almost entirely, and he’s lost a not insignificant amount of weight. We’re trying to stop that weight trend by increasing tube feeds, but I think we have to increase them more than I realize, or else something else is going on.
  • CMV He continues to have elevated CMV levels. He’s been on a treatment dose of Valcyte for a month now and the level’s finally gone down. He’ll be on treatment dose for another month, then down to a prophylactic dose for a while. Again. Me = not a Valcyte fan.
  • There’s just something else. Something. He’s struggling. And I don’t know what it is, what we’re missing, how we’re missing it. I’m hoping Genetics, neuropsych, immunology, and Aerodigestive can suss this out. If it doesn’t happen on its own, and if nobody has any major breakthroughs on their own, I’m going to ask if everyone – neuropsych, transplant, genetics, aerodigestive/ent, immunology, and either letters from or conference calls with OT and possibly his BHIS worker – can get in a room together and share ideas. We have so many pieces. So many. How do they fit together?

Feeding Tube Related Issues

So, Teddy has been complaining of pain from his button since fall. When we were in Iowa City for another appointment, I asked if someone from GI could pop over and measure his stoma to see if he needed to size up his button, figuring that would be an easy answer. And as it turned out, his button was quite small and he needed to size up quite a bit.

But the pain didn’t stop. So fast forward to January and I asked again if someone from GI could see us for an actual appointment this time, while we were in town for another appointment. So the same doctor saw us.

And he said that Teddy was faking pain for attention.

And we’d had such a bad day, and this was a the end of that very bad day, and I just didn’t have any “what is your actual problem, you big giant jerk” left in me that day, so I said essentially, “well, that doesn’t seem right, but fine, whatever” and left. (Honestly, the nurse brought me a free parking coupon because that is how beat down I looked. And felt.)

Anyway, so I made an appointment with a GI locally. I didn’t even care which one.  (Not Dimeo, who we’ve seen before, because evidently he won’t see you if you’ve also seen another GI doctor, and I don’t put up with that crap. Sorry, but you don’t get to boss me about how many professional opinions I get to seek.)  Anyway. I see Peds GIs at this point as completely fungible and essentially worthless, so I decided I didn’t care who we saw. We ended up with some gentleman originally from India who works in the Mercy Subspeciality Office.

Miracle of miracles, he listened to what I had to say about the pain, he asked Teddy about the pain. We discussed the possibility of referred pain from whatever’s causing it to hurt when he pees. We discussed the possibility of constipation (and ruled it out). Discussed what he felt was more likely – evidently you can develop abdominal wall pain from a Gtube that doesn’t really have any specific cause. And I can see that, I guess. It seems like the standard GI cop-out answer, but we’ll accept it as a possibility. He discussed imaging – ultrasound to look at abdominal wall for anything out of the ordinary, and another set of scopes. We’re not going to do scopes. It’s not that bad to warrant all that. But we’re going to do ultrasound. And if he needs another CT or another set of scopes for anything ELSE, then we’ll think about adding on looking at this gtube from inside if he’s still having pain. The doctor is also going to check with their surgery clinic to see if they have any thoughts, since surgery is who mostly handles Gtubes at their clinic.

It was nice to be listened to and taken seriously.

Hearing Test, Finally Concrete Answers

Well, Teddy had his, I don’t know, 300th hearing test this week. He’s never passed one. Ever. He passed the sedated ABR but he’s never passed an awake hearing test in the booth. And the question has always been whether he’s failing the tests because he can’t hear, whether he’s failing the tests because he can’t understand or follow the instructions, or whether he’s failing the tests because he isn’t paying attention. And if it’s that he can’t hear, is it because he has fluid in his ears or because he has an unrelated hearing loss? We’ve spent a LOT of time at Speech Therapy working on following verbal instructions. And he’s older. It isn’t allergy season and he doesn’t have a cold. We had high hopes this time.

And it worked. He followed the instructions. He remained engaged.

He failed.

But it was a good, solid fail. He definitely has a hearing loss. He didn’t have any visible fluid.

Mild. Both ears. Something in his middle ear. When she stimulates the cochlea directly, he hears perfect.

She said she wouldn’t give hearing aids to a homeschool kid with a mild loss at his age and likely level of cooperation.

But the more I read… the more I’m pro-hearing aid. A huge percent of  learning happens accidentally, by overhearing things, vs being specifically taught them. It’s hard to know if this is attributable to his hearing loss, but man, do I notice this with him. The things that kids have usually managed to pick up just from being alive… he hasn’t picked up.

Kids with an untreated mild hearing loss are so much more likely to be held back a grade than their peers… that says to me that treating would be beneficial.

Especially in a kid who already has SO MUCH working against him. I can’t do anything about the kidney failure/transplant. I can’t do anything about the drug side effects. I can do something about this.

So we have an appointment with Otolaryngology and Audiology in January in Iowa City. We’ll see what they say and go from there.

Teddy Update

It’s been a while! Sorry! But things have been going fairly smoothly.

Teddy was admitted to the hospital for dehydration in mid-December. His chronic diarrhea combined with an increase in vomiting (probably a GI virus) to result in an almost total inability to absorb any water through his GI tract. I have no idea why this happens, but it does. He reaches a point where any fluid I give him, orally or through his tube, either runs directly through him or is vomited back up immediately. So he needed a few days of IV hydration and he was back to his regular self again.

This was the afternoon before we drove over. He just wanted to snuggle Genna.

We had a great Christmas at home, with everyone well, it was awesome! I evidently didn’t take pictures.

Teddy locked himself into the bedroom. That was awesome. This is him just sitting holding a dolly, wrapped up in the rug, waiting for us to get him out.

A few days after Christmas, I noticed Teddy’s hands had suddenly developed a bright red bumpy rash between his fingers. It appeared to be itchy. We assumed he’d gotten into something, but when it didn’t improve after a few days, we went to see the pediatrician, and then the dermatologist.


Both considered but dismissed scabies and hand foot and mouth disease, and both said probably eczema, take this cream. But the cream wasn’t helping and it quickly reached a point where Teddy was so miserable that he was up most of the night crying, screaming, and scratching. It spread to his feet, legs, torso, and back. Then they started to crack and peel. After seeing some pictures, nephrology agreed it was *probably* eczema, but there were definitely other possibilities, including some kind of scary (though unlikely) ones, that are unique to transplant patients. This is why I usually run everything past nephrology – because neither our pediatrician (who we love) nor most of the specialty doctors in Des Moines have much experience with transplant kids.


So they had us come see the dermatologist who sees their kids in Iowa City, and she confirmed it IS eczema (a particular type called dishydrotic eczema) and it’s unusual to see it in kids his age, particularly immune suppressed ones. AND she said that the two expensive creams we’d been using would not do any good at all because they’re not nearly strong enough. She gave us the mack daddy of topical creams and said if that didn’t help, we’d try an oral steroid. After just a few days of use, it *seems* to be helping his hands, but not his feet, so we’ll see. He’s still up a lot at night itching and crying.

After dermatology, Teddy had his first routine Echo, which we were checking for heart wall thickening as a result of his high blood pressure. The wait for that was *forever* but all three kids hung in there really well – I was quite proud of them. And though we thought Teddy might need to be sedated to get a good enough look at his heart, he actually just laid there all perfect. It was amazing.


Last for the day was our clinic appointment with nephrology. They’re really happy with how he’s doing! Some of his labs continue to be bizarrely “off,” but they’re not too much off, so we’re calling it good. His blood pressure seems to be well controlled. And they don’t need to see him for THREE months! Whoohoo! We’ll continue to get labs monthly or more frequently (we’re still trying to get that prograf level under control), but we don’t have to make the drive until April!

She also mentioned that in some kids Prograf can cause an overall heightened allergic response, and you start to see kids who get eczema, EoE, allergies, etc. as a result of the prograf. (Prograf is his main immune suppression. The GI doctor thinks he might have EoE, and obviously he now has eczema.) There is another med we could switch him to – one that I find appealing because it has a much lower cancer risk associated with it, but it’s not as well-studied in kids. Prograf is sort of the Old School standard med, and the other med (Rapamune) is newer. So we’re going to think about it for a while, do more research, and we’ll see. 🙂

And this is just for fun. Teddy loves pockets now. And he has NO concept of relative size.

Hospital Stay, New Plan for GI

Well, last week, Mr T was admitted to the hospital for dehydration again. I don’t understand what causes this, but every once in a while he gets something going with his GI system that starts as watery diarrhea that gradually gets worse, then one day it’s markedly worse and he starts vomiting every drop of fluid I try to put in him. That leads to nothing good at all. A fluid bolus with the IV and a day of high-bicarb IV solution and he’s as good as new.

But this hospital stay was the one that finally pushed me far enough to decide to take his GI care elsewhere. We left with no definitive plan, no answers, and no followup on previously-made plans. The GI thinks he might have EoE and wants to do some testing for that, but he has to be on a high dose of omeprazole for 8 weeks before the testing. But we were discharged on the same dose. GI stopped by one time while we were there and offered no opinions, thoughts, or solutions. The GI resident was rude, and kept asking questions and then interrupting my responses. He then passed along incorrect information to the rest of the team.

EoE can be tricky to diagnose and to treat, and I have completely lost confidence in the GI team at UIowa. We decided to see if we can get an appointment with the EoE team in Cincinatti. I think we’ve started that process; I’ll update when I have any information.

Clinic Visit

We had a GREAT clinic visit today. I didn’t even have my suitcase in the car and I didn’t bring my Just In Case bag of supplies. 🙂

We started off by popping into the clinic quick an hour before our appointment to get a Prograf level drawn. (Prograf is one of his immune suppression drugs, and it must be drawn when his next dose is due, which is at 9.) Our plan was: quick labs, then playground until appointment check-in time.  How it worked out: Hit lab at 9:10, exit lab at 10:10. Not kidding. And the phlebotomist today was NOT super skilled at finding Teddy’s veins. And his third poke, after we switched arms, he screamed like we’d just cut his arm off, so that was fun. 😦 He’s usually so good for labs with his super favorite phlebotomist here in town, with some protesting but not much… so I think it was not so much him but more her.

We discussed…

– Teddy’s labs, which are stellar. 🙂 Except his Prograf, which was really high for some reason when we did labs last week at home. (which is why we were doing them again today.) Today, after a dose reduction, the level was even higher. Yay us. So we’re reducing a smidge more. Dr. Z has learned from experience with T that if you reduce his Prograf dose what seems to be a reasonable amount, his level tends to plummet, so we’re inching down by .1 mL at a time. 🙂

– Blood pressure. Not stellar. We had tried reducing his dose of BP meds about 2 months ago, and it became apparent immediately that THAT was not going to work. (In theory, working kidney should mean his BP will eventually be normal without meds, but nothing is guaranteed.) We increased back up to not quite his old dose, but now we think that not only was that just not enough, but that he’s actually even outgrown his old higher dose. End result: now he’s on an even higher dose.

– Weight: He’s still gaining and at an OK rate, so we’re not messing with diet at all. Height, he’s also growing. 35 inches today. That’s 8th percentile for height. Last time I looked him up, he wasn’t even on the chart, so this is a huge change. 🙂

– Growths. He has this thing on his leg. But it doesn’t look like a wart, doesn’t look like Molluscum, so it might just be… a bump of skin on his leg. It hasn’t changed in any way since I first noticed it 3 months ago. But now he’s got what looks to everyone to be a wart on his foot. We’ve got a pediatrician appt in 2 weeks and we’ll get her opinion and probably have her remove it. Before you message me about duct tape or home treatment or leaving it alone, warts are viral and can be very very hard to get rid of in transplant patients. It is better, generally, to take action early than to risk it spreading. And when I say spreading, I mean… really really spreading.

– Sleep and why Teddy doesn’t. Nephrologist doesn’t think it’s related to his meds and might just be his wiring. Ultimately, it doesn’t matter, we’re not changing his meds. Life experience of other transplant moms suggests that at least some of might be related to the high prograf level. (His sleep’s been bad since his transplant, but markedly worse in the last week or two.)

– Headaches. Teddy bangs his head, which he’s always done, but it had gotten much better and now it’s worse again. This might also be related to the high prograf. And makes sense, because his banging was worst when his prograf level was at its highest right after transplant. I think he gets headaches, and he bangs his head (either on a hard surface, or with his hands) to help it feel better.

– Diarrhea and vomiting. Again, both had gotten better and now both are worse. God only knows why. I’m so sick of this topic of conversation, and yet it’s probably the one thing I discuss the most often, ever. I bet I’ve talked more about diarrhea in the last year than any other single subject. I tried putting him back on the reflux meds, and we went from 2-3 vomits a day to 3-4 a week, so that’s an improvement. We’ll see. Otherwise I’m at a loss and can’t decide if I want to get back on GI to figure something out, or just drop it and fall back on trying to wish it all away.

– Vaccines. My favorite subject. He’s a year post transplant now, so he needs to get the very few shots he’s behind on. Did the DTAP today and will hit the other one (Hep A I think) in 2 weeks with the ped. Then he’s good until he’s 4, I guess. They think I’m funny because I know literally nothing about the schedule even though he’s my third. Not that the “recommend schedule” matters to me, lol. I’m clearly going to follow my own plan anyway.

– bicarb. We finally get to reduce the bicarb a bit and see how it goes!!

How is Teddy Doing?

He’s doing really really good!!

Labs have been pretty good. The big important kidney ones have been super as always. The rest of them are kind of iffy/great/not great. Some things are great, some things are not great. We’re working on figuring out what’s up with everything and getting it solved.

The biggest thing is that since I reduced his calories from 1400 to 1000 about 5 weeks ago, his diarrhea has disappeared. He had several days of diarrhea earlier this week, but it seems to have gone away, so I’m thinking it might have been related to travel. (We went on vacation. More on that later.) And since I’m not feeding him as much volume during the day, he gets hungry. And eats. Food. With his mouth.

Yes. Food. Mouth. Chew, swallow. He does it. Not a lot. But more than he used to, and he’s shown a great willingness to try new foods in the last few weeks, as well. Pancake. He licked a muffin. He swallowed a piece of pasta. He’ll eat an ounce or so of his blended diet (what I put in his tube) every day if I feed him with the syringe.

It’s exciting.

In the last 2 months, he’s learned how to run, and how to jump and get both of his feet off the ground. 🙂 He loves it and does it for fun. He has discovered how much he loves water play, finally evidently realizing that water is, in fact, not evil. 🙂 He plays in the sink. He insists on baths whenever he thinks of it. He plays at the water table outside. He loved the pool on vacation.

He’s very very very 2. And very very very active. In fact, we had a group meeting with several of his therapists and a new person this week and the new person kept talking about how very very active he was, and the therapists all said almost in unison, “he’s calmed down considerably compared to 6 months ago!” And it’s true. Once he learned how to walk, he was just basically moving all the time. Read a book? What? Why would I do that when I could look at the book for 3 seconds then go get five other things, and look! something shiny, and I forgot I left my car here, and there’s a ball!! Non stop. Now he will actually play with something, which is nice. But he’s still just very very very active. And Two.

He’s going to have an evaluation with a speech language pathologist in a few weeks. He’s got a sizeable vocabulary, and he can string words together into sentences. I think we can understand him better than we could understand either of the other two at this age (but that’s a really really low bar – they both had terrible speech). But he is not able to converse. He cannot or does not answer questions. There’s no two-way conversation with him. So we’ll hear what she has to say, and if it’s something to be concerned about or if he’s just at the tail end of normal.

His blood pressures have been pretty stable – enough so that I’m going to ask at our next appointment if I can try reducing his dose of anti hypertension meds.

We get to try stopping one of his meds next week. Kids are usually on Valcyte for 3 months following a transplant, but with Teddy’s congenital immune deficiency, his doctor wanted to keep him on it for a year. Then when his viral levels started climbing, she doubled his dose and so he’s been on a pretty high dose for a good long while. We’re going to stop it and monitor viral levels for a few months and if everything stays low, then we’re done with Valcyte for the time being. 🙂 Yay.

There’s another med we’re going to discuss dropping, as well, but I haven’t had a chance to research it yet.

We had an appointment with the Genetics doctor a few weeks ago to discuss the outstanding issue there, and though he discouraged proceeding with the testing suggested by the liver biopsy (in favor of waiting to see if symptoms develop), I basically insisted on doing it anyway. They were going to get started on the paperwork and draw blood for it when we’re in Iowa City next (early July). I should know by then how long it’ll take to get results. It’s one of those things, they want to see us in person to discuss results, so even after the results come back, we’ll have to wait until we can get out there for an appointment.