A healthcare experience

I want to share an experience here.

I won’t talk about the absolute frustration of Teddy’s latest hospital stay, because that falls into the realm of things I somewhat expect, though am always disappointed when they happen. (But we’re not going to do an admission at Blank again unless it’s something regular-kid that doesn’t impact his kidney.)

I won’t talk about having to explain to doctors that no, the child doesn’t have a port for his subcutaneous infusion, which should be obvious simply from the word subcutaneous.

I’m going to talk about his eye exam.

Last year was the first year Teddy could do letters at his eye exam. We’d been working hard on letters, he had had a good day, it was amazing.

Yesterday was not amazing. He’s sick (uti). He’s just gotten out of the hospital a few days ago. He hasn’t done school in a week. He’s totally lost confidence in letters over the last several months and I’m not sure why. And he was uncomfortable to start with, because after every hospital stay we go through this thing where medical places make him uncomfortable.

He was doing his coping stuff – throat clearing. Coughing (yeah, that’s a fun one with all the people with perfectly normal immune systems all hyper about covid). Itchy nose. Itchy eyes. Fidgeting. Unable to look in a single direction. Asking what time it is over and over. He was just really uncomfortable. But he was trying. But he could NOT say the names of the letters. And so he said “I don’t know,” and then we couldn’t tell if he couldn’t see or if he didn’t want to say. So I asked “can you see it ok and you aren’t sure what it’s called, or you can’t see it?” “I don’t know.” (“I don’t know” is Teddy’s typical answer to any question, though he’s been getting better about this lately – his therapist came out 2 weeks ago overjoyed because he’d actually answered a question and she’d never experienced that before, lol.)

So I asked the lady (not the eye doctor, but like the vision equivalent to a dental hygenist, whatever you call that person) if we could do shapes. She looked at his file and said “no, last time we did letters.”

Um. What?

I mean, I realize that we did letters last time, but this is not last time. I want him to have glasses that are the right prescription, not be stuck with crap glasses that aren’t right because you decided he could do something that his brain has decided he cannot do today. There was absolutely zero chance that if she kept saying “what’s this letter, what’s this letter, what’s this letter,” he was suddenly going to be able to do it. ZERO CHANCE. Know what might have worked? Going with shapes, letting him do a few of those, then throwing the letters back up. That might have worked.

I was getting ready to say all of that out loud when she heaved a big sigh and said she’d “let the doctor deal with it.”

The doctor was actually amazing. She tried twice with letters, and I asked him again “can you see it ok but you just can’t remember what it’s called?” And he ANSWERED! And said yes. And the doctor said “oh, ok!” and pulled out a sheet of paper with the alphabet on it, and just had him point to the letter that matched what he saw on the screen.

See? That was so easy.

(And then she did the holding the lenses up to his eyes and looking with her flashlight thing which somehow magically gets her to the right rx for him without really needing his involvement, because frankly that’s probably the best option anyway.)

But why couldn’t the dental hygenist of the vision world lady do that? Why have to make everyone feel bad? I try SO HARD to not make Teddy feel bad about this stuff. He’s honestly trying to the best of his ability. It’s ok. Some days, he can’t remember how to write letters to save his life. I don’t know why. I don’t know if the information runs away, or if his brain can’t get the message to his hands. I just don’t know. But if it’s not happening, it’s not happening.

And, frankly, I also try not to make MYSELF feel bad about this stuff. I don’t care that he can’t do things like peers. Honestly, it’s fine. But yes, it still hurts a little to do things like explain to strangers that no, my almost 10 year old can’t seem to remember what K is called and it sucks but guess what, honey? You being stubborn about it isn’t going to make his brain and mouth work together to give you an answer. TRUST ME, I’ve tried that before.

And yeah, the lady didn’t know about the no school and the hospital and the absolute ravaging his body took from the pseudomonas and the fact that his kidney’s been knocked down a bit this time, and he might not be functioning at his best – but she shouldn’t HAVE to know all that to be able to see what’s right in front of her face – a child with special needs who was struggling to do as asked, and who WANTED to cooperate but couldn’t do what we were asking.

I don’t need people to change things around to suit him. We make it work. If lights are too bright, he sticks his head in his shirt or jacket. If there’s too many people, we let someone know we’ll be in the hall. If it’s too noisy, same. We do all that. I don’t need people to invent a new way of doing eye exams for him. But I do expect people to be kind and to use the tools they have at hand to work with us. And I expect professionals to recognize that I am the expert on my kid.

Dear Family and Friends of Medical Parents

Dear Friends and Families of Medical Parents Everywhere,

You might not realize it, but it’s likely that your friends who are parents of medically intense and/or special needs kids are lonely. This life is a lonely one. Most of us feel as though our friends who parent only more or less typical kids just don’t understand our lives. We often face misunderstanding or denial of our children’s diagnoses by family, we receive criticism of the way we parent by basically everybody who’s never parented a kid like ours, and we spend inordinate amounts of energy on calling doctors, therapists, insurance, and pharmacies.

And yet we sometimes act in a way that makes you think we don’t want your company. You might sense that we find some conversations awkward, for example. Or we might consistently decline invitations. Or accept invitations and then cancel. Sometimes at the last minute.

I totally get it that, eventually, you might decide to just stop inviting us.

After all, we almost never show up.

And you know we’re busy. And you know we’re tired.

And it feels like you’re helping. Like you’re doing us a favor. Saving us from having to decline yet another invitation.

But, to us, it feels like we’re being excluded. Yes, we may almost never show up to things that you invite us to, but we still like being included. For one, we like being treated like adults who are capable of deciding for ourselves what we can or can’t make work in our lives. We know you don’t mean it like this, but when you decide for us whether we can or can’t come to something, it feels… discriminatory? infantalizing? insulting? like a thinly veiled way to tell us you just didn’t want us there?

But also, we just plain like knowing we haven’t been forgotten, that our friends or family still want us around. That we still have the option of hanging out with regular people if our crazy lives allow the opportunity. We already feel pretty lonely, but seeing pictures of all of our friends except us going to a movie together just really drives that home. Seeing that your family had a big thing and you didn’t even know about it just plain hurts. In this age of social media, the previous polite understanding of “don’t talk about an event in front of people who weren’t invited” doesn’t seem to apply any more. Inevitably, selfies are taken and shared, and our lives feel just a little bit more lonely, more isolated.

I’m bringing this up today because, yes, we had a situation or two like this in the recent past in our own family, but also because I see this come up time and time again in special needs groups. I’m almost certain that, for the most part, the hurt is very unintentional. But it’s still real.

I have some fellow SN friend parents who I invite to things like my kids’ birthday parties. I invite them and then I say “I know this won’t work with your schedule, but I wanted  you to know we’d love to have you if you can work it out!” or “I know this might be hard to make work, but let me know if there’s something I can do to make it easier.”

You can do this, too, if you feel you need to. Or you can just keep inviting your friends/family who are parents of Medical/Special needs kids to things. Maybe some day, they’ll actually show up, but in the meantime, chances are good that you made their day a little brighter just by including them – just by letting them know you haven’t forgotten them.

June is super full of doctors

If you’re familiar with the musical Carousel, and the song June is Bustin’ Out All Over, sing that to the tune. June is super full of doctors!

SUPER full.

Not really June, though. More like the last half of June. That’s really all we’re doing last week and this week and part of next week. Just doctors.

So we had one Iowa City Day last week (got another one coming up). Transplant clinic and then Neuropsych. Highlights:

Labs look good, except the things that look bad. The things that look bad are from known, transient causes, and will hopefully straighten out on their own. We met with nutrition, who I liked way more than last time. She has more families with blended diets now, she’s a bit older now (I mean, it’s been a few years), she wasn’t as full of fresh-out-of-college advice. She gave us the GREAT news that because the bulk of T’s diet is gtube and very healthy, he can have as much oral salt as he wants. Which is awesome because 3 months ago, his nephrologist asked us to cut oral salt. And Teddy’s oral foods are basically all salt based. We switched to low salt chips and he stopped eating them. Whoohoo!

But she wants us to increase calories. Dramatically. And I already increased dramatically. I’m already not getting them all in on a daily basis because he’s so very very puky with very low volume tolerance, and we’re restricted by meds, too. (meds + food = puke, every time. Food has to be separated from meds by at least 45 minutes. Meds are at 9 and 9:30 am and 9 pm. Food can’t start any sooner than 10 am and that’s pushing it. Can’t go any later than 8 pm. Unless he’s up early and I can get food in him at 7, but no later than 7. Or if I want to feed him at 10 pm and risk that he wakes up during the night to vomit. *OMG I thought this would be easier post transplant and the fact that it isn’t is a major source of frustration and bitterness for me.*

He got a renal ultrasound the day before, for his urology appointment later this week, and nephrology peeked at it and confirmed how very very pretty his pretty pretty kidney is.

Then his urine came back all icky. So we’re going to do a 24 hour catch to screen for kidney stones and also we dropped more urine off this morning to double check for UTI.

We had HOURS between appointments and the plan had been to burn off some energy at the playground, but it was POURING rain, so we ate ice cream for lunch and played go fish before going to the waiting room for neuropsych about an hour early and playing with their toys and puzzles. The doctor came out about a half hour early and said she was back from lunch and ready to go if we were, so whoohoo.

That appointment both went well and was harder than anticipated. It wasn’t the “OK, NOW I know what’s going on with him!” that I had expected. Last year, the story was that he was too inattentive to really be doing his best for their tests, but if we had him on meds that worked for this year, it should be pretty revealing. And it was sort of, but not so much in other ways. I’m dancing around this a little, but it was both revealing and still not revealing enough. But evidently this was the visit where we finally wrote down a new diagnosis, but with the understanding that further diagnoses are definitely still pending.

I don’t know. I’ll write more about this later maybe. I’m still mulling.

So last week was Case Manager, Ultrasound, Iowa City, BHIS a few other things. This week is BHIS, therapy, dentist, some sort of screening appointment for a potential new psychiatrist, urology, Dr. Noble (ugh), a few other things. Next week, we cap off our insanity with another full (3 appointment) day in Iowa City, where we meet with the people who decide our fate. Not really. But it feels like a heavy, destiny-influencing day. Genetics. Immunology. Aerodigestive.

Teddy is never going to graduate ever

<note, that’s my sarcasm talking>

37% of children with mild hearing loss failed a grade by 3rd grade.
http://hearinghealthmatters.org/hearingandkids/2014/mild-hearing-loss-mild-problem/

35% of teens with ADHD drop out of school.
30% of teens with ADHD have failed a grade.
https://www.additudemag.com/the-statistics-of-adhd/

60% of kidney transplant kids have had to repeat at least one grade by the time they are teens (this study wasn’t exclusive to kids who had been diagnosed as infants or in early childhood).
https://www.medpagetoday.com/nephrology/kidneytransplantation/12804

Another diagnosis I’m not quite ready to talk about yet has a 61% likelihood of failing a grade, with 83% failing to meet academic standards to move on, but being moved on socially.

Add those all up. (which, yes, I know you would never ever do because that’s not how it works.) This kid is DOOMED.

<insert emoticon of choice here to indicate that I’m being sarcastic and kind of humorous, and not serious.>

OK, but being serious here for a minute. Look at what he’s working against. Look at how much the deck is stacked against him.

Going along with all those statistics are others I didn’t report. What % in each case develops depression or a conduct disorder from being so discouraged, from being ostracized, from always being the bad kid, from feeling stupid. Those numbers are also huge – higher than the percent of kids who have failed or been held back – because so many of these kids eek by academically but struggle – academically and socially and with self-esteem and self-worth and by the time they hit junior high, they already perceive of themselves as being bad and friendless.

Now why on EARTH would I ever want to put him in a public school? With those kind of statistics? I truly don’t understand the bais doctors have towards public school.

Guess what? At home, he doesn’t feel like a bad kid. At home, he experiences success. At home, he is challenged but not frustrated. If he doesn’t get something, we have the freedom to try again, to try a new way, to put it off for a while and try again later. At home, I can talk to him one on one and he doesn’t have to struggle to hear and see and focus with a classroom full of other wiggly kids. He stands the GREATEST chance of success at home.

And at home, he’ll never fail. Ever. His education might look vastly different than it did for his siblings, but that’s OK.

Croup, apnea, and hearing

Soooo… in my ongoing effort to keep this blog a place where I can go to remember T’s personal history, while also keeping friends/family current, here is an update.

T’s been getting croup every month since May. May, June, July, and August were all mild enough to only require a few days of prednisone but not ER. They mostly started in the MORNING, which means I can get on top of it with pred before night. (And yes, croup is actually worse at night, your body’s natural levels of something I’ve forgotten the name of lower at night, and that lets croup get worse. Will be discussing with God in the future.)

About Oct 10, I allowed myself to observe (in my head, not out loud, I’m not THAT stupid) that he hadn’t had croup in September. Oct 20, he had the worst croup episode to date. *note to self: never notice anything ever again*

This is from my Facebook: “So. This morning. T woke up at 5ish with a slightly stridory cough. I thought ‘I will need to remember pred before bed tonight.’ About a minute later, ‘no, pred right now.’ Went potty, came back, he was REALLY struggling to breathe and decided on er. Halfway to hospital, I decided I wished we had called 911. We got to er 15/20min after he woke up with the slight cough. O2 of 70 with a doc standing by to intubate.”

That is how fast he can crash with croup.  (struggling to breathe: retractions at collarbone and ribs, drooling, unable to sit or stand, coughing with every inhale.  Then halfway to hospital, he stopped coughing. He couldn’t.)

And when I say “doc standing by,” I mean, the doctor brought a chair and sat at the foot of the bed. Out of the way of the nurses and RTs, but RIGHT THERE. For an hour or so.

And then as I run down to the bathroom after he’s stable to a) pee and b) have a moment, I pass the doc quietly saying to another doctor that that was scary. Ha. Then he came back in to tell me “that was a pretty significant episode of croup.” I think he could see the crazy in my eyes that told him I was already well aware of that.

The thing about airways, especially in kids, or so I am told, is that they’re fine until they’re not. Even once we got his airway open enough to get his sats up, he was still NPO for several hours just in case, because having an open airway at that moment still wasn’t any guarantee that he wouldn’t suddenly collapse.

So, back to otolaryngology we go. Fortunately, we already had an appointment with them because his apnea’s been markedly worse lately, and the monthly croup plus worsening apnea seemed to be related/concerning, plus the whole Teddy-cant-pass-a-hearing-test thing. Does he need tubes again? Does he need hearing aids? I’m tired of being put off by local docs, I want this solved. (detectable fluid in ears doesn’t seem to be evident every time he doesn’t pass a hearing test, so…) So we’re seeing audiology and oto in January, which was the soonest they could get us in.

PCIT experiences

I’ve heard good things about PCIT from others. Evidently it’s all about having a great provider. We did not have a great provider. I’m not sure there are any great providers in central Iowa.

The first phase involves learning to play with your kid. I read through the rules and thought, “yeah, isn’t that how you play with a kid?” but now I’m in a few groups on FB where people are trying PCIT and it’s all new to them, so maybe not. Basically, do you what they’re doing. You don’t direct, you follow. You copy, you repeat what they say, you observe aloud what they’re doing. And you don’t ask questions.

Our provider assumed I’d have a hard time with this, because I homeschool. Evidently homeschool moms just can’t stop teaching, ever.

And to a certain extent, she was right. I ask questions. Kid says “What is that?” I’m not going to answer with what it is, especially if I know they know. I answer “What do you think?” Because that’s also good parenting.

But what kept me from “passing” was a) not enough of each of these things (observing, repeating, etc) in the first 5 minutes after we arrived – when he was mostly walking around the room getting settled in. Hard to repeat their words when they aren’t talking.  and b) asking questions – because when I can’t understand him, which I often couldn’t at the time we were doing it, I guess at what he said but I ASK it. PCIT wants to you state it definitively. But that is completely counter to best practices with communication difficulties – I’m not going to assume I can speak for my child. If I don’t fully understand him, I’ll take a stab at it, but I won’t TELL HIM what he told me. That’s rude, plus it just makes him mad. “blee do”  “Do you want Playdough?”  will elicit an agreeable “yes” or “no” from him.   “You want playdough” will result in angry “NO!” and immediate frustration. NOT MY GOAL.

So fine. I was having a hard time passing, but I contend that the standards were silly.

But what made us quit was the next part.

The next part, you move to giving the child orders and enforcing consequences for not doing as told. First consequence, the time out chair. Child must sit for a certain amount of time, still and quiet. If they talk, the time starts over. If they continue to not “obey” in the time out chair, then they go into the punishment closet, which they call something else. It’s a small room where the child is placed, alone, for a period of time.

So, knowing Teddy as I do, I know how this will go down. He can’t sit still and quiet. He just isn’t  capable. So he’ll refuse to do something, then will be unable – due to a neurological condition – to sit still and quiet.

And like hell I’m locking him in a tiny closet for that. Just no.

Add one thing, Take something else away

And here we have an examination of the real limits of a human being. Doctors who are reading this, pay attention.

Teddy’s had a few UTIs lately. (And I still don’t think we’ve solved that entire problem, but that’s a mystery for another day. Another day soon, but nonetheless, another day.)

The first line defense here is to put him on a pee schedule. He’s to pee every 2 hours.

Every 2 hours at my house, this happens.

Teddy, please go pee!
—  Who is coming over? (because I always have him pee if we’re expecting company)
Nobody, it’s just time to pee.
— Where are we going?
Nowhere, please just go pee.
— I don’t want to!
OK, well, it’s time to pee. Please go pee.
— Maybe later. (This is Teddy’s way of saying no without getting in trouble)
Teddy. GO PEE.
— I already peed! (meaning, he already peed in his lifetime)
TEDDY. PLEASE GO PEE.

I’m not exaggerating. Every 2 hours. He hates it (because who would love being interrupted every 2 hours to pee?). I hate it.

PS, I didn’t ask them if they wanted me to wake him overnight to pee. I was afraid they’d say yes and that would break me.

I also have to constantly be after him to drink. He still spills cups unless it’s meal time, and he has trouble drinking out of various larger containers, so we still use a toddler-size sippy cup. I have to refill that sucker 10 times a day and then nag him to drink it. All. Day. Long. I hate it. He hates it. (And I still have to give him water overnight for the summer, lol.)

I also have to provide pretty much 24/7 supervision. Teddy cannot be left unsupervised. And yet he’s old enough to realize that just hanging out wherever mom needs to do stuff isn’t fun.

And then there’s eating. He still doesn’t really eat. What he does eat, I have to feed him. It can take an hour or more to eat a small portion of something. He does eat some foods on his own (chips with dip, which he would eat all day long, goldfish crackers, sometimes graham crackers, and occasionally yogurt) but anything that might be considered, you know, FOOD, no.

So this eats up basically my entire day. I mean, there’s also meds. Blood pressure. Regular kid stuff like baths and getting dressed. Running a home. Homeschooling. Taking care of the other two kids. Feeding myself. Occasionally doing something I actually want to do.

Oh, and he never sleeps. Still.

And I am just at my limit. I can’t add every 2 hour pee breaks to my already long list of crap I have to do all day every day. (Doctors: moms are just human. You say you want us to take care of ourselves, then don’t criticize us when we do it. You cannot just keep adding things and adding things and adding things without breaking the person you’re adding them to.)

So we decided to cut something out. And since the pee breaks and the water keep the kidney happy, but we have an easy alternative to the eating… we are dropping that for the summer.

And I feel really good about it.

His eating was going pretty good until his last admission, when he stopped eating entirely for several weeks, then started eating only a few crackers a day, and lost 5+ pounds. We’ve been clawing our way back since then, but he’s still not eating the variety of foods he was eating before, and he’s not eating as eagerly, and he’s not eating as much. And I’m tired of it being a thing.

It feels like when you really want your kid to start reading (or understanding multiplication) and so you push and push and they just don’t get it. If you drop it entirely for a few months and try again, sometimes it clicks the next time. (If not, drop it and pick it up again later.)

Maybe when we pick it up again, it’ll have clicked. In the meantime, I’m letting him have chips as snacks, but I’m not letting him eat them all day. He gets served food with the rest of us, or any time he says he’s hungry, and he either eats it or he doesn’t. If he doesn’t, whatever. It (or something else) goes in his tube. I’m not really willing to blend food all day long, so I don’t just blend up whatever we’re eating for him, but I’m using baby food packets now and will make a few blends next week or so, and it’s fine.

I don’t mind going back to blending and I’m good with not having “Feeding Teddy/nagging Teddy to chew with his teeth/Reminding Teddy to swallow/Spending 20 minutes trying to get Teddy to swallow/Developing new therapy methods on the fly to help him swallow/dealing with Teddy’s fear of most foods/firmly insisting Teddy at least lick the food” be on my to-do list 3-4 times a day.

You know, most kids have started eating full time by now after a transplant. Teddy’s not.

I won’t say I’m not disappointed, because I am. Everyone with a baby who needs a kidney transplant looks forward to life being at least fairly normal within a few years of transplant (I mean normal besides labs, clinics, and the constant worry about impending rejection and cancer). But whatever. This is small potatoes, and it’s something we’re familiar with.

Why not give up on the water, and just do the water overnight and stay focused on eating orally? Well, two reasons. a) he drinks willingly, he just doesn’t think of it on his own.  b) that will NOT help the UTI problem.  c) giving him ALL of his water overnight means going back to changing diapers a few times at night. No thanks.

And before you comment or whisper among yourselves – yes, he’s in feeding therapy. His therapist is awesome. She wasn’t surprised he stopped eating during his last hospital stay and she isn’t surprised that he’s taking the long road back to where he was. I haven’t told her our plan (we haven’t seen her for over a month, just with weird schedule things), but I suspect she’ll wish that we would keep at it with the feeding him. And that’s fine, because she only sees that part of the picture.

Another Evaluation, more puzzle pieces

Well, April saw us visiting ChildServe again (and remembering why we don’t like that place, lol) for another evaluation. I decided I wanted to see what a new set of eyes would say about what’s going on with him. I don’t want to get into everything, but Teddy just has a hard time with life in general and I don’t feel like we have enough pieces of the puzzle to really help him get a leg up.

So. They don’t feel that he’s on the autism spectrum, since he chats with adults readily and looks them in the eye. I don’t have the written reports yet, but that’s what they said verbally.

They agreed with the ADHD diagnosis.

They diagnosed him with Unspecified anxiety disorder.

They agree with the expressive/receptive language disorder diagnosis.

Their findings included “lack of coordination,” which isn’t new but is the first time anyone’s really just come out and said it, lol. Generally, he passes gross motor skills tests with flying colors, but they weren’t as impressed.

And they noted that he has retained primitive reflexes, and that addressing that issue might help the above issues plus his general developmental delays.

I’ve done some reading on retained primitive reflexes, but it looks like I’ll be doing some more.

They suggested IQ testing, but I think the neuropsychologist we see in Iowa City will be doing that in July. If not, we can always find someone who isn’t ChildServe to do that for us. I honestly don’t really want to. I’m not emotionally ready to find out we’ve got that working against us, too. But they’re the second or third professionals to suggest we want to have that checked, so… sigh.

They also suggested genetic testing to determine what caused the kidney failure but since none of them know anything about kidney failure, I suggested they stuff it. (I did this in my own head, I did not tell them out loud. Nobody seriously thinks the kidney issues might have a genetic cause. There is no Syndrome that causes a different defect in each kidney.)

CMV and Update

I know I haven’t updated in a while.

Teddy’s had an interesting time since Christmas, but everything is OK.

He started getting high, sudden fevers accompanied by lethargy and just general overall “off” ness, but no ill symptoms. No runny nose, cough, etc. Fever + lack of other symptoms = concerning if you’re immune suppressed. The first time, we suspected flu and ran off to the ped for a flu swab. They did urine culture and RSV and strep, also. Urine came back with white cells, so we did an antibiotic injection and a 10 day course of abx. Ultimately, the urine only grew a common skin flora, which is usually just a contaminant, and nobody ended up thinking he actually had a UTI.

5 days after finishing the abx, he had another high fever (104/105). Back to ped’s office. Same tests. Nothing. Ended up getting admitted to figure out what was going on. Stayed for 4 days, did all the tests. He ended up testing positive for a GI bacteria, though he didn’t have the symptoms of a GI bug. (He did have some diarrhea, but it only started after he started the heavy duty IV antibiotics.) We treated for that. Evidently, his urine grew the same skin flora.

5 days after finishing the abx, another fever. Another ped visit. More tests. Urine grew the same thing. Someone finally says, hey, maybe this isn’t a contaminant. Did another urine culture after being sure to clean him REALLY REALLY WELL, and it grew the same thing.  Treated that, no more fevers.

After the first fever, we also ran all the “you have had a transplant and you have a fever” blood tests, which includes the three viruses that we monitor. (CMV, BK, and EBV.)  The CMV came back quite high. He’s had elevated CMV before that was no big deal, but this time it was REALLY ELEVATED. So I spent a Saturday driving to Iowa City to pick up the really expensive drugs to treat that. But this complicated the whole “what is wrong with him” situation, because CMV also suppresses the immune system (meaning that it leaves you even more vulnerable to lots of horrible stuff), and then CMV itself and ALSO the drug that treats it both suppress your bone marrow. So his hemoglobin dropped like a stone. So the CMV plus the fever plus no symptoms had the doctors quite concerned, but I think it turned out to be JUST the UTI plus the CMV.

Took a few months, but we got the CMV back under control. As of the last time we got labs (2 weeks ago), the CMV was back down to 0. We have to treat it for another 3 months and then we can finally drop that drug.

In the meantime, all the ick meant Teddy stopped eating and drinking. It’s been about 2 months and he’s finally back to drinking as much as he needs to orally now, but we’re still climbing out of the ditch when it comes to eating. Last week, I got him to eat cheese and one serving of oatmeal. This week, he’s has macaroni and cheese twice. But otherwise, he’s devolved back to eating just chips, which isn’t exactly the foundation of a healthy diet.

So there you go.

Teddy’s Croup

Or, Sarah tries to explain why this croup isn’t the same as your kid’s croup.

Last night, Teddy and I went to the ER for Teddy’s 12th (14th?) round of croup.

“Why don’t you just take him out in the cold air/use cool mist?”
“Can’t you get a nebulizer?”
“Why don’t you use an inhaler/albuterol?”
“Who goes to the ER for croup?”

That’s what I hear basically every time we do this.

This blog attempts to answer those questions and more.

First, Teddy’s croup tends to be moderate or severe. The croup that most kids get, and with which most parents are familiar, is mild croup. Bet you didn’t know there is actually a rating scale for croup. 🙂  http://www.rch.org.au/clinicalguide/guideline_index/croup_laryngotracheobronchitis/   and https://www.mja.com.au/journal/2003/179/7/croup-assessment-and-evidence-based-management     Croup is basically swelling/inflammation of certain parts of the airway because of a virus (a variety of viruses). The airway gets inflamed and creates that barking cough sound.

Teddy has subglottal stenosis (narrowing of airway below vocal cords). His stenosis is mild and of unknown cause (potentially damage from previous intubations, but surgical notes don’t really give any reason to suspect this – but neither do they give reason to suspect he was born with it). But his ENT thinks it plays a role here – likely in why his croup gets so severe so fast (more on that later), but not necessarily in why he gets it so darn often. Nobody has any current theories about that. Likely a combination of immune suppression plus the stenosis.

The signs I look for at home as a signal that we should head to the ER are:
– Lethargy. Is he putting so much effort into breathing that he has no energy for anything else?
– Stridor at rest. Does he have stridor (noisy breathing – not wheezing) when resting?
– Retractions. Are parts of his body sucking in when he’s trying to breathe? Like the spaces between his ribs, around his collarbone or his sternum?
– Drooling.

What we don’t look at: o2 saturation. Evidently, O2 sats are a poor measure of severity of croup. http://www.aafp.org/afp/2004/0201/p535.html    By the time O2 sats are low enough to cause concern with croup, it’s really super bad. You don’t want to be home. The one time we showed up in the ER with sats in the 80s with croup, they became a virtual tornado of activity, completely skipping the rest of triage and running to meet the respiratory therapist. I waited a bit too long that time to go in.

Second, why don’t we treat it at home like normal people? Well, that’s a two part answer.  To start, “normal” at home treatments have been proven to be completely ineffective. Despite every other medical website out there recommending it, cool mist has been proven ineffective. (https://www.ncbi.nlm.nih.gov/pubmed/12208675)  Cold air can be mildly effective.

Also, Albuterol isn’t a treatment for croup. Albuterol is a bronchodialater that relaxes muscles. That works great for asthma, COPD, etc. but spasming muscles aren’t what cause croup – it’s tissue inflammation. “The use of albuterol in the treatment… of croup is ineffective and can delay needed care. http://www.medscape.com/viewarticle/708193_3   “Albuterol breathing treatments don’t help the voice box swelling caused by croup, and hence don’t make the stridor better. Albuterol is effective for treating the wheezing associated with asthma or reactive airway disease.”  http://childrensmd.org/browse-by-age-group/newborn-infants/croup-hit/

We do have a nebulizer at home and I can give him saline treatments with it. However, that isn’t usually a very realistic solution.

Teddy’s croup goes like this, every single time: Go to bed, perfectly healthy. Wake up some time in the wee hours and have a slight horse cough. Mom gets up and gets the prednisolone. Within the space of 20-30 minutes, he is lethargic, has stridor when resting, retracts while breathing, etc., and we end up having to go to the ER. Usually, he has also vomited the steroid (the severe coughing gets him gaggy). There just isn’t time to try a saline nebulizer treatment, or whatever else. When we see those symptoms, we are to go to the ER.

Third, why do wego to the ER? Well for one, the meds he needs to treat the croup aren’t available for home use. I can give him the relatively mild prednisolone at home, but in the ER, he can get a much stronger steroid. The nebulizer meds they use to treat him are similarly only available in the hospital – not at home. (http://www.rch.org.au/clinicalguide/guideline_index/croup_laryngotracheobronchitis/)

The main reason we go to the ER – and the reason why the meds aren’t available at home – is that by the time you’re bad enough to need the big meds, you’re bad enough to NEED to be in a hospital. Airway collapse is a legitimate concern with severe croup, and it’s important to be somewhere where there are people who can intubate if things get bad enough.

*You cannot/should not treat moderate/severe croup at home.*

He has been able to stay home a few times with croup. We’ve given the prednisolone and kept him comfortable and calm and it didn’t get worse. It stayed at mild croup. That’s totally treatable at home, just like normal kids. 🙂

But even normal kids should go the ER if their croup progresses to include the symptoms I listed above. Severe croup is not common at all, but it isn’t anything to mess around with.

So hopefully that explains why Teddy goes to the ER for croup.