Our Teddy Bear's Journey

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

Big Trip to Iowa City

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

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. πŸ™‚

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. πŸ™‚

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. πŸ™‚Β  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.”Β  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. πŸ™‚Β  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 inΒ  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. πŸ™‚

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…Β  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.Β 

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. πŸ™‚

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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Croup again, and bonus mystery fevers

I realized that I haven’t updated for a while, whoops!

Teddy had a quick hospital stay in August (or maybe early September) with… Croup!Β  Yes, that winter illness that he gets year round because he’s special that way. πŸ™‚

In keeping with his standard, he went to sleep with no fever, no runny nose, no signs of a virus at all. And he woke up a few hours later in respiratory distress. This time it was pretty scary bad – he would not lay down, his color was terrible, he tried to vomit but couldn’t. He had stridor (wheezing sound when you try to breathe) and retractions around his ribs and up by his neck (skin goes in instead of out when you try to breathe in). He was drooling. By the time I got fully awake, I threw the pulse ox on him while I got some shoes on and his o2 saturation was around 84. That’s pretty bad. Bad.

We drove to the ER and the nurse checked his o2, it was 82, and we skipped the rest of triage and ran back to a room while she paged respiratory therapy and then started treatment without waiting for the respiratory therapist to come. It was pretty bad.

Poor kid. Two or three treatments later, he finally was able to sleep again, but the ER doctor let us know that there was no chance they were letting us go home. He considered letting us stay in the ER, but thought it likely that he’d need another treatment since he still wasn’t doing fantastic.

So we had our first in-town admission. It was interesting. I’m used to every third person we see knowing Teddy on sight, lol. Nobody there knew us. Nobody there knew anything about kidneys. Or kidney transplants. They never got his meds from the pharmacy (I had Randy bring them from home). Phlebotomy didn’t come up on time for his Prograf level (which is a drug trough and must be drawn before the next dose is given, which must be done at 9).Β  But the kids and Randy could come hang out with us, which was also weird.

They let us go home the next evening.

But that was his 9th time getting croup – 4 times warranting ER trips, and 5 times treating at home with prednisolone (that we have specifically for this purpose) in less than a year. That’s a lot. That’s a lot even for a transplant kid.

So, we get to add ENT to our team. πŸ™‚

Hopefully they’ll have an opinion on what the deal is and why he keeps getting croup and what we can do to stop it. A theory’s been floated by nephrology that it’s not even croup, that it’s something that mimics croup, but I suspect we’d need Dr. House to figure it out, lol. I think if it was structural abnormalities, it would have been noticed during one of the 20 odd times he’s been intubated, but maybe not? Who knows.

In the meantime, Teddy’s had Hand Foot and Mouth disease (remarkably mild – or else misdiagnosed, which is a definite possibility) and now mystery low grade fevers that come and go for the last few weeks. Bleh.

And an added extra bonus: I’m now first aid/CPR/AED certified, so if you collapse and lose consciousness, look me up.

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Feeding Therapy – new place

We ended our family’s services at ChildServe in the spring. We’d been unhappy there for a while, but staying was easier than leaving, until we found out that they had no real plans in place to address the spread of contagious illness among their patients. (they neither monitor nor alert immune compromised families when other patients have, for example, chicken pox.)Β  Not kosher.

We just started back up at Blank, and so far, I’ve been impressed.

ChildServe focused solely on introducing new foods. But none of the success we had with him trying (putting in his mouth and spitting right back out) new foods at ChildServe ever translated to success at home. He didn’t add any new foods to his diet.

The therapist at Blank has noticed, in just 2 sessions, that he has very weak muscles throughout his trunk, core, neck, face, and jaw. Now that he’s no longer really *afraid* of food (which he was for a long while, but he’s gained confidence as he’s learned how to control his gag reflex), he’s lacking the physical development to actually chew it. He can’t move his lips quite right, and he can’t move his tongue quite right. He also is still majorly lacking in confidence with movement, which we’d noticed, and she guessed correctly that he doesn’t enjoy swinging. It all points to the same problem he had when we started PT and that evidently hasn’t gotten entirely better – he doesn’t have a good sense of where his body is in space, and he doesn’t have a good sense of where stuff is in his mouth. This is why sometimes he puts entirely too much food in his mouth – he needs to fill it completely up to figure out where the food is. (but then he can’t swallow it so he spits it out.)

He also has very low confidence in himself, which shows up in ignoring you if you ask him to do something he’s not sure about.

So… we’re sticking with an every other week schedule for right now because he mostly needs to work on muscle development and that’s largely going to be on my shoulders to do at home. We’re starting with animal sounds, lalala, chewy tube, and wheelbarrow exercises. πŸ™‚

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Clinic Day April 2015

We started the day with nephrology. Teddy’s turning into an absolute GIANT these days, rocking the scale at 14.3 kilos in just a diaper, and a big 37 inches. He’s up a few pounds and an inch and a half over his last appointment. πŸ™‚Β  Fatty.

Everything looks good from a nephrology standpoint. He had a few weird things in his labs, but they’re easily explanable by his phenomenal growth.

By the time we got to cardiology, Genna was really revved up and hyper and the doctor was very patient with us. He wants to monitor Teddy’s heart every year for changes, but as it stands right now, his stenosis isn’t too bad. There’s no way to tell how fast it’ll progress, so we’ll just keep an eye on it. It’s most important to keep his blood pressure under control, which obviously we’re already trying to do with nephrology, and have recently found the dose of anti hypertensive that works well for him.

Then we saw dermatology, who said that we probably wouldn’t have trouble with his dishydrotic eczema until fall again, but that I needed to embrace the cream and not fear it. If I hop on using the prescription cream as soon as I notice redness in the fall, it shouldn’t get as bad as it got.

However, he does seem to have “regular” eczema that flares up bad when his seasonal allergies kick in. It’s worse this year than it was last year.

That’s about it.

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Lurie Children’s in Chicago for GI

Catching up a bit here. In March, we went to see a GI doctor in Chicago for more ideas on Teddy’s continued vomiting and diarrhea. We loved him!

First, the appointment started exactly on time and lasted 90 very unhurried minutes. The doctor was familiar with Teddy’s history and conversant on the details. He spoke of his other transplant patients. When he asked what Teddy ate and was told that he gets a blended diet through his gtube, he said, “ok,” rather than, “what? what is that? how do you know how many calories he gets?” and he didn’t seem stupefied by the idea that this meant that his caloric and volume intake would fluctuate on a daily basis. All awesome things.

He decided to delay any action on the diarrhea. It’s improved significantly and doesn’t seem to be causing the same issues with Prograf levels (diarrhea affects how the body absorbs his anti rejection drugs) or bicarb levels (in his blood). He still gets wicked diarrhea from time to time, but it’s not constant.

He suggested the first thing we should try with the vomiting is to feed him less food less often. So I’ve adjusted how we feed him to give him only 120 mL (which he can’t do more than that any more anyway) every 3-4 hours. I don’t start feeding him via his tube until noon because I like to give him some empty-stomach time to feel hunger and to help stimulate him to eat orally, so this means that I can no longer get all the food in during the day. So we give him some food overnight now, as well, mixed with his overnight water (800 mL).

This has significantly reduced (but NOT eliminated) the daytime vomiting, but we’ve exchanged it for occasional night vomiting. It’s still an overall reduction in vomiting, so it’s still an improvement, but I really hate waking up in the middle of the night to catch vomit.

He also suggested adding Ginger, but nephrology nixed that idea immediately.

Also, he wants to proceed with another scope, gave our local (well, Iowa City) GI some specific instructions to follow, and wants to review the report and the biopsies himself. He’s checking for EoE, as well as some malabsorption issues. He said it’s highly unlikely this will turn up anything, but we need to check to make sure.

Finally, he thinks it’s more than likely that Teddy has slow gastric emptying, but would prefer to solve that with changes in feeding schedule rather than drugs. There is one drug (it’s actually an allergy med) that is used for slow emptying as well as an appetite stimulant that he thought might be useful. We’re currently pondering whether to give that a try. Hey, once you’ve got 10 prescriptions, what’s one more, right?

The scope is scheduled for May in Iowa City and will be Teddy’s first time NPO without a hospital admission for IV fluids. I’m supposed to give him mostly pedialyte the day before and get his whole 1 liter in before the NPO starts, even if that means he misses most of his food calories that day.

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Blenderized Diet for Tube Fed People

I wanted to wrap up Feeding Tube Awareness week by talking about what we feed Teddy.

Most people with a feeding tube are fed a liquid formula.

I believed there was a better option.

First, we kept Teddy on breastmilk for as long as possible, and 100% breastmilk until he was 1 year old. Just like his siblings.

Then, I started him on solid foods. Just like his siblings.

Except Teddy got his food blended up into a liquidish form and put directly into his belly.

It’s entirely possible (despite what your doctors may tell you) to feed a person regular foods through their feeding tube.

Some families blend up whatever everyone else is having. I figure, I’m in 100% control of what he eats without having to worry about preferences or flavor… I’m stuffing him with super nutritious foods! He does not eat what the rest of us are eating. πŸ™‚ (and we eat pretty good… I just prefer Teddy to have a more nutrition-focused diet while I’m still in control of it.)

It’s not super hard. It’s not a super lot of work. It’s not dangerous. As long as it’s blended smooth, it’s not going to get stuck in the tube. There are a million reasons doctors have for not recommending a blended diet, but the fact is that most of them just aren’t familiar with it, and the unfamiliar is scary.

“What if I want to try blended foods, but our doctor won’t let us?”

I chafe a little at this question, to be honest, because your doctor doesn’t have that kind of power.

When I made the decision to do this with Teddy, both his doctors and his nutritionist had been pushing formula for months and months. I asked them what they would recommend I feed him if he were eating orally. Would they recommend I put him on formula? Or at this age (1 year), would they recommend I start feeding him CKF-appropriate foods?

Then, after the answer to that was a bunch of stuttering and stammering, I calmly explained that I had decided to start feeding him regular foods through his tube. I didn’t ask. I didn’t open the floor for discussion. I just told them this was what I was going to do. And after a year of working with me… they possibly knew better than to argue, lol.

We went through three nutritionists after that. Bam, Bam, Bam. Then we landed with Susan, our current nutritionist. We were, at that time, her only patient on a blended diet, but she was willing to learn and follow our lead. πŸ™‚ After a lot of initial uncertainty, she now brags about his diet to her fellow nutritionists (including our old ones, lol), and advocates for them to support other families if they show an interest in blended diets.

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