Our Teddy Bear's Journey

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

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.

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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.)

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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.

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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.

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After my last post, I ended up messaging Dr. Linn Dyken back, thanking her for her prompt response. (5 weeks)

I then asked her if she could recommend a colleague who is also a sleep specialist. I asked for clarification on the ADHD issue. (More specifically, I asked of educational setting changes one’s diagnosis/who a person is. Does a person have a diagnosable condition, regardless of setting, or do their diagnoses change based on where they are? And I suspect the answer is more “varies depending on where they are” than she is willing to admit, lol.)

I got a response with zero answers but the doctor kiss-off of “Teddy is lucky to have such a strong advocate.”

I did, however, finally figure out how to get ahold of the neuropsych doctor who we saw initially (tip: don’t call CDD because they’ll pretend they have NO IDEA who that person is). I laid out the whole thing for her. a) I didn’t feel we still had any real answers – we had some pieces, but nobody seemed to be interested in putting them together  b) Our experience at CDD was very frustrating and we are never ever returning, does she have ideas on where else to go  c) What are our next steps

She wrote back, a 5 ish paragraph email, within 8 hours.

Neurocognitive Deficit is a generic term that means some cognitive issues are present, but given mixed findings and due to age, there isn’t anything more specific we can say at this time. She thinks/hopes as he gets older, we’ll be able to better suss out what the actual problem is, and hopes to see him annually or semi annually.

She expressed general uncertainty about all his other “things.” CDD said he doesn’t fit the criteria for ASD (but I’m not sure I believe them), but he’s confusing enough for them at this point that it’s hard to say if he has something like OCD or an anxiety disorder, or if it’s just his age (which I don’t think it is – he’s not really like other kids his age), or if it’s just ADHD, which can cause similar symptoms in some children. So an official, “I’m really not sure, but let’s keep watching and see if we can figure it out” is better than “kiss off.”

Also, she said he absolutely fits the criteria for ADHD and no, being homeschooled plays no role. She was waiting to read the reports from others, and her main hesitation is age. She doesn’t prefer to diagnose kids this young. That said, she did end up making that diagnosis and sees this as his prime issue at this time. The OT at CDD seemed to agree, blaming lack of attention and focus for his very poor fine motor skills. She thinks there is more than just ADHD going on, but addressing that first will make it easier to sort out the other things. But her only idea for addressing it was meds, and I’m not sure I’m willing to go there. There has to be someone who can help us without meds. Who that may be… I don’t know.

So, here is the state of “special needs” help in Iowa. The two main multi-disciplinary places are ChildServe and CDD. I’ve never met a family who was happy with CDD. The doctors I know at UI generally all agree that it’s awful. There are some good people there. But the overall experience, and the developmental peds in particular, are not good at all. Then there’s ChildServe, which also has good parts. But most parents I know walk away from their therapy experiences at CS feeling very dissatisfied. There is also a general sense among parents I talk to that ChildServe overdiagnoses kids to funnel them into therapy because that’s where they make their money. (That was certainly our experience.) (And I’ve talked to a few friends informally who formally worked at CS who have said much the same thing. We’re using Blank Peds Therapy right now, but there’s no overall holistic “what’s going on with this kid” sense I get there. He didn’t walk in with specific diagnoses, and I don’t get the sense he’ll walk out with anything, either.

And not to get all hung up on labels, but I personally think it’s easier to deal with something when you know what it is you’re dealing with. I want to be all “oh, it doesn’t matter what you call it…” but it does. Because how you treat it kind of depends on what the problem is. (I mean, all the ST in the world isn’t going to help if the problem behind your speech difficulties is untreated hearing loss, for example. Teddy can’t answer questions very well – but we would treat that differently if it was stubbornness, vs hearing issue, vs auditory processing issue, vs language issue, vs attention issue.)

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So. Our evaluation day at CDD

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

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

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

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

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

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

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

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

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

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

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

Been a long time.

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

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

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

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

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

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

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Iowa City Update

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

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

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

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

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

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

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

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

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

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

AND he ate a bite from a cheeseburger.

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

So… progress.

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Feeding Therapy

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

 

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