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.

35% of teens with ADHD drop out of school.
30% of teens with ADHD have failed a grade.

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).

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.

Disaster Planning for Special Needs Families, part 3

Now let’s talk about PLANS.

First. This first bit is general stuff for any family. Now, while there is no emergency, think through four places you can go and meet up with others in your family. Think of one location in your neighborhood. Another location outside of your neighborhood but in your town. Another location outside of your town/vicinity but in your state. And another location outside your state. Friends’ or family members’ houses are ideal, but nearly any place will work. Obviously, you will want to choose locations based on how they may be able to accommodate your special needs. Planning to meet up at Aunt Susie’s place isn’t a great plan if your family member uses a wheelchair if Aunt Susie lives in a 5th floor walkup apartment.

Communicate all of these places with everyone in your family. In the event there is an emergency and you are unable to communicate with others in your family, you just follow the plan. If the emergency affects just your house, you know to meet up at your neighborhood spot. If the emergency affects your neighborhood, you know to meet up at your town spot. If the emergency is more widespread, you meet up at one of the other locations.

Now, here’s the special needs part. Think through ANY special considerations involving your special needs family member. What if your family member uses a wheelchair, but the family member who isn’t at home has the accessible van? What if you anticipate that your family member would melt down if an evacuation were necessary? What if your family member has severe anxiety about leaving the house? How will you handle these things? Have a plan NOW so you don’t have to come up with one on the fly.

Bonus points: write down these plans and put them in your binder.


Second. Communications. In many emergencies, local communications can quickly become overwhelmed. But sometimes, though you can’t connect a call across town, you can still call out of your area. Establish a friend or family member who doesn’t live in your area who can serve as a communications hub for your family. Then have everyone MEMORIZE this number.   Also: write it in your binder.


Third. Predicted Emergencies. In the event of any sort of predicted emergency (hurricane, civil unrest, major ice storm), remember that your family is not like other families. Your family has special considerations. Think through those special considerations NOW.

For example, in my family, if there was a major ice storm predicted, or if we lived in an area expecting flooding, I’d need to check to make sure we have enough medication on-hand and, if not, contact the pharmacy and ask them to work it out with the insurance company to let us refill early just in case.

When Teddy was on dialysis, we knew we’d need to report to the hospital (2 hours away) in the event of any major power loss, which might have meant that we’d plan to travel sooner rather than later if a major winter storm was predicted.

If your special needs family member is dependent upon electricity to survive, maybe you need to think about installing a generator (and keeping sufficient fuel safely stored). Or perhaps you need to consider evacuating your home to someplace with more stable power in advance of any predicted emergency. (For example, many families in Orlando move into Disney hotels during hurricanes.)

Sometimes, the best course of action for a special needs family is to get out of dodge sooner rather than later. This is a VERY tough call to make, but if you have some place you can go, and you can get there without too much hassle, it might just be best to get out before the emergency hits.

Look at Harvey – I absolutely understand why people didn’t evacuate, and I think that, all things considered, it was the best decision for most people, even though it didn’t work out so great in retrospect. But families with special considerations might have decided to leave a few days in advance of the storm – just in case. Is this always going to be possible? No. But if it is possible… maybe it’s best to go.

I read a story about having to rescue several dozen pediatric dialysis patients from their homes for dialysis before not getting dialysis killed any of them – the national guard and coast guard helicoptered them to the hospital. I’ve had friends get stuck at home in snow and ice storms and start to panic about getting their kids dialysis. And I get it – I’m not judging those families, at all. I can’t say I’d have done anything different (of course, we were already IN the hospital for the vast majority of Teddy’s days on dialysis…). Making the decision to leave is HARD, and it seems SO silly when nobody else is leaving, and when there may not even be a storm, and even if there is, it probably won’t be that bad. But, if possible, getting out early might be the easiest course of action when it all comes down to it.

I’d sure as heck rather be laughing at my very cautious self while spending a few days with an out of town friend than be stuck in my home in a panic about my special needs family member.

Disaster Planning for Special Needs Families, part 2

Now let’s talk about… THINGS

Get out some paper. At the top of one page, write, “Things Needed To Stay Alive.” Take a minute and write down all the things your special needs family member needs in order to stay alive that go beyond everyday needs. (For example, if your family member eats orally and can eat relatively normal foods, you don’t need to write this down.) Our list includes medications, feeding pump supplies, and baby food for the tube. (He gets a blended diet at home, but access to fresh fruits and meats plus a quality blender, cooking supplies, etc., seems a bit much to manage during an emergency, so we plan to fall back on baby food.)  Perhaps your family member needs a ventilator, or a CPAP, or catheters.

On another page, write “Things Needed To Function Well.” On this page, write down everything that your special needs family member won’t actually die without, but that will make everything go more smoothly. Our list includes a few special toys, a weighted blanket, playdough (portable and helps keep his hands from being destructive), and the kindle/charger. Perhaps your family member needs a nightlight, or a particular “thing” that soothes them. Or maybe you don’t *NEED* a piece of medical equipment to survive, but having it would be better than not having it – I have our manual blood pressure cuff on this list, as well. His pressures are stable enough that during an emergency, I could probably get by without it, but I’d feel better having it.

Now, look at list #1. Can you make a “go kit” for your special needs person that includes these items? Chances are good that you can include SOME, but not all. I can put feeding pump supplies and syringes into a bag, but I can’t pack away the pump or his meds. Pack 10 days’ worth of whatever items you CAN pack away into a special (roomy) bag that is used JUST for this purpose

Then, type up what is left on your two lists – start with “needed to live,” and move on to “would be nice.” Include quantities for what you’d need for ten days. Type “IN CASE OF EMERGENCY” at the top. Print this list in a largeish font size. Attach this list (laminate it if you can) to your bag.

Note that I say TEN days here. The people at ready.gov recommend that “go bags” have three days of supplies. But your special needs family member *requires these things to survive* and also *you can’t usually buy replacements or easily acquire them at shelters.*

I know you think you’ll remember this stuff. But sometimes in the press of a major disaster, things you think you will remember go right out the window. You’ve already done all the thinking now, when you’re calm. During the emergency, just look at the bag, start at the top, and fill it with what’s on your list.

(Then consider making more general “go bags” for everyone in your family, with clothes, food, and supplies for 3 days.)


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)

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.