Our Teddy Bear's Journey

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

Blenderized Diet for Tube Fed People

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

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

I believed there was a better option.

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

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

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

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

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

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

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

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

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

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

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

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Feeding Tube Awareness Week

This week is ALSO Feeding Tube Awareness Week.

I thought I’d take a moment this week to talk about Teddy’s tube.

Why does Teddy have a feeding tube?

Kidney disease often makes you feel nauseous. Perhaps because of this, or perhaps for other reasons, babies with kidney failure often don’t eat enough. Additionally, Teddy had high-output renal failure, which is a completely nonmedical way of saying that he peed out waaaay more than he should, and his body would literally pee itself into dehydration. To counter this, he required more intake than a typical baby – about twice what a typical baby would get, actually. We tried without the tube for about a month (from NICU discharge at 1 month until he was about 2 months), but during that time, he was chronically dehydrated, he was not gaining weight (and ultimately started losing weight), and our whole day revolved around Feeding The Baby. Or Trying To Feed The Baby. And meds. Forcing Meds Into My Baby. Forcing Breastmilk Into My Baby. Constantly constantly constantly stressing because he wasn’t taking in enough. When our doctor called to suggest it was time for a feeding tube, I agreed basically immediately (much to her surprise, lol). I don’t regret for a second.

Sometimes I wish we’d started off with the tube right away… but I’m ultimately glad we tried it without first. We tried. We failed. But we tried.

 

Why doesn’t Teddy eat orally now? Isn’t everything “fixed” since his transplant?

Teddy never really ate orally. He continued to use a bottle part time for a few months after his gtube was put in, but ultimately came to rely on the tube more and more. Ultimately, I don’t remember when but it was well before he turned 1, he stopped eating orally altogether, and actually developed a pretty intense oral aversion. Kissing him on the lips caused him to gag. Putting toys to his mouth caused him to gag.

He was also vomiting basically continuously during this time. (He’s had very very few days in his life where he hasn’t vomited – and most of the days with no vomits have been days he’s been on TPN – IV nutrition – while letting his gut rest.)

So… Oral Aversion.   Weak Mouth Muscles.     No recollection of how to handle food in his mouth.     Food is legitimately scary to him.

He’s made a LOT of progress since transplant. He is feeling better. He WANTS to eat. He has mostly figured out HOW to eat. He doesn’t gag any more. He puts everything in his mouth. (toys, I mean) But some textures and flavors of foods are still just too much. And some/many foods, he just can’t physically chew and move around in his mouth.

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Congenital Heart Defect Awareness Week

This is CHD Awareness Week.

Why, you might wonder, is Sarah putting this on Teddy’s blog?

That’s right. Remember that routine echocardiogram in January? We didn’t find heart wall thickening like we were looking for. We found a heart defect instead.

Teddy has a heart defect called Bicuspid Aortic Valve. (Sometimes it’s called Bicuspid Aortic Disease, BAD, lol.) Your aortic valve (between your heart and your aorta – the giant artery leading from your heart to the rest of your body) is supposed to be tricuspid – with three flaps. Teddy’s has two flaps. So it doesn’t open all the way (making the valve area narrower) and it doesn’t close all the way, either.

Associated with this, he also has stenosis (narrowing/hardening) of his artery, as well as regurgitation (blood flows backwards). It all means that his heart has to work a lot harder than it should.

There’s also a risk of other effects such as aneurysms in the aorta, in the brain, and in the renal veins, as well as renal cysts (which I find interesting). They think that BAV might be related to an underlying connective tissue disorder, as well. And the risk of aneurysms, as well as aortic dissection, isn’t necessarily related to the degree of complications from the valve. (In other words, a REALLY bad valve doesn’t seem to be any worse than a just sort of bad valve.) Another complication is infective endocarditis (infection of the lining of your heart), which is an interesting one because being a transplant recipient puts him at a higher risk of endocarditis,  as well.

This is a relatively common heart defect. The BIG problem is if you have this defect and don’t know it – a good chunk of athletes who keel over suddenly, for example, are found to have BAV or related issues. If you do know you have it, you can monitor for aneurysm development (at least in the aorta and renal veins), and for the stenosis or valve function to get bad enough to require surgery – hopefully BEFORE something happens.

Chances are good that Teddy will need open heart surgery at some point in his life. Chances are also good that this won’t be during his childhood. Most likely not until he’s a teenager or later.

We won’t see cardiology until April, at which point we should have more information. I think it’s a good sign that they didn’t need to see us immediately. :)

And because I like to give people more information than they probably want, here are a few scholarly articles on the subject:

This is a general overview of Bicuspid Aortic Disease, with a few pictures.

 

And this:

BAV occurs in 1% to 2% of the population, compared with 0.8% for all other forms of congenital cardiac disease combined. Given that serious complications will develop in ≥33% of patients with BAV, the bicuspid valve may be responsible for more deaths and morbidity than the combined effects of all the other congenital heart defects.7 Although patients with BAV may go undetected or without clinical consequences for a lifetime, the vast majority will require some intervention, most often surgery. The important clinical consequences of BAV disease are valvular stenosis, regurgitation, infective endocarditis, and aortic complications such as dilation and dissection.

http://circ.ahajournals.org/content/106/8/900.full

 

 

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Teddy Update

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

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

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

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

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

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

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

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

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

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

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

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

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Hospital Stay, New Plan for GI

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

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

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

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Tips for Families planning a Make A Wish trip to Disneyworld

When we were planning our trip, I couldn’t find much online specifically aimed at families taking a Wish trip to Disneyworld. So many of the regular Disney planning things don’t pertain to Wish families, but I had so many questions about the things that would be unique to our trip. Hopefully, this document at least partially addresses that hole. :)

What our Wish trip included:

Travel there, travel back, and 5 days of park tickets. You can also typically request one or two special things – we requested tickets to Mickey’s Not So Scary Halloween Party. They say it’s a week trip (7 days), but it’s really just 6 nights with 2 travel days and 5 days to enjoy the trip.

We got a rental car – a van, actually. Some families instead made use of the Mears shuttle service. The car rental included carseats, but we brought our own for Teddy. We used their booster, which was clean and seemed nearly new.

We stayed at Give Kids the World Village, which includes free meals.

There are also a plethora of other tickets available for other experiences and places in the area – you’ll be given a list at checkin. Plan for check-in to take a few hours. Yeah.

This is an excellent resource for planning. It’s the GKTW Village Guide. It has a lot of details in it.  And this is their pre-trip section of their website.

You’ll also want to join the DISboards, and look in their disABILITIES section for lots of great info on Disney with disabilities, health problems, and Wish trips.

DisneyWorld:

Our Wish trip included 3 days of park hopper passes to Disney parks. This is not enough to see everything, so don’t try. Seriously don’t try. Also, Do *not* just show up at Disneyworld without a plan. Get a guidebook or at the very least read some websites to get a good sense of what is there and what you want to see and do. Make note of any time-sensitive plans you might have (parades, fireworks, other shows).

Your Wish trip includes a Genie pass – it’s a pass with Genie on it. This pass is your golden ticket. It plus your Make a Wish buttons and/or GKTW Village button gets you into every Fastpass line, and lets you bypass lines at Character greetings. This means that you can make your plans to ride certain rides without any concern for crowd levels, expected wait times, etc. You don’t need to worry about Fastpass reservations. Just pick what you want to do and go do it.

You’ll also notice, hopefully, that your Wish buttons typically get you better character experiences. Not always, but generally, we noticed the characters spent more time with our kids when they knew we were there with MAW. Sometimes, they shut down the line and let our kids have a little while in the room alone with the characters. Sometimes, they pulled other characters for group pictures (which NEVER HAPPENS outside of a Wish). It was awesome, and the character interactions were probably the highlight of the trip.

If you’re going to see a parade or fireworks, get there early. 30 minutes at least, an hour at least if you’re there during more crowded times. If you see people starting to line up for the parade – find your spot!

You also get a free Photopass CD. Use the Photopass photographers as much as you can (but then also have them take pictures with your camera, or take your own pictures – some of the photopass pictures are very disappointing). Find out before you go about Magic Shots – I totally forgot and am kind of mad at myself. :)

Universal Studios:

The “standard” wish trip includes 2 day park hopper passes to Universal Studios/Islands of Adventure. Universal is not a great place for the smaller kids. Teddy had two rides he could do, total in two parks, and one of those he got to do only because the employees were very very kind. He’s no 36 inches tall, even with shoes on. They knew it and I knew it. (But we were on a Wish trip and they let it slide.) It is great for older kids. Like, Wally is 10 and big for his age, and could ride everything and likes thrill rides – he was the only kid who really enjoyed Universal. That said, the treatment at Universal is amazing. The pass for Universal gets you a personal escort from the ride entrance around through back entrances and directly onto the ride. (Disney, you still have to wait a few minutes because you’re in the Fastpass line – Universal is really front-of-the-line access.) Universal also has very very few rides that don’t get you some degree of wet – from sopping wet to just a bit spit on. I don’t enjoy that at all.

We did get to meet several characters, which the kids loved, and we had a lovely lunch at Circus McGurkus.

Again, it’s not a good idea to show up without a plan, but we largely did Universal without a plan (because we totally ignored the plan we had) and it was OK. Lots of wasted time, though. Also, never split up and leave your cell phone with the other adult in your party. Finding your husband and other 2 kids is a great way to waste a few hours at Universal. :)

Sea World:

Sea World. OK, I have no issues with animals in captivity. But sea world was dirty and their employees were about what you’d expect for, I don’t know, our local theme park. The experience here just wasn’t as good. The pass you have gets you into their “fastpass” line, whatever it’s called, but that doesn’t really amount for much – or didn’t while we were there.

Give Kids The World Village:

The house that you stay in at GKTW is nice. It’s a duplex, and though we could sometimes hear our neighbors, we didn’t hear them often. The kitchen includes a full size fridge/freezer, a cooktop, a microwave, coffeemaker, blender, toaster, and dishwasher. There’s no housekeeping during your stay, but you don’t have to clean when you leave. There’s also a washer and dryer and free detergent (it’s Tide). Bathtub, shower, two bathrooms. Dressers. Super nice.

A Present Fairy visits every day with fun little presents. Some are kind of junky, some are awesome.

The pool is nice – zero-entry and they have PVC wheelchairs available for use.

The village has all sorts of fun things – characters come for greetings, there are organized activities, there are fun places to visit, a carousel, etc. Some of the activities and whatnot are really amazing, and some are kind of… awkwardly not amazing. But it’s fun!

The food is free with your meal card. The food from Katie’s Kitchen for lunch is REALLY REALLY good. The rest of the food is OK. The express breakfast is not so great, lol, but the breakfast at the Gingerbread house is pretty good. They had good grits and fresh waffles. :) And there’s free ice cream basically all the time. And there’s pizza delivery.

General Tips:

All the parks have bag check. Don’t settle in for the day at the park until you’ve passed bag check. In other words, carry your bags until you get through bag check.

I have a unique way of packing our bags that made things much easier on us. I use a bag within bags system that makes finding things faster and easier. Our big backpack we left in the stroller at all times, and I caribinered it to the stroller to make it harder to steal. Inside was a large bag (the small wetbag I sell at Wallypop) full of diapers, diaper cream, wipes, and changing pad. Once through Bag Check, this bag went into the seatback pocket on the stroller for easy access. It was also caribinered in. Then also in the big backpack were a series of smaller bags: one for rags, one for First Aid items (bandaids, advil, Shout wipes, Bodyglide, moleskin, sunscreen), one for Entertainment (coloring books and crayons, bubbles, glow wands), etc.  I also brought the ipod in a waterproof case to which I attached a leash and a caribiner so I could clip it to the stroller. Sometimes T needs to chill out with the ipod, and I’m ok with that, but I didn’t want him dropping it. (I also had a caribiner leash for the sippy cup, and a few other leashes that came in handy for stuffed animals. :) )   I also packed a smaller backpack that I never took off. It contained my money, my phone, and Teddy’s food and meds in a small lunchbag.

Stroller

This was our stroller. Giant caribiner there on the left, to hold misc items. Bag with diapers in it behind the seat (mickey bag). The other seat back held the fan and our daily plans. The panda bear is a stroller lock. We rented a stroller from Orlando Stroller rather than using the park strollers that we could have rented for free with our WIsh buttons. The rented stroller is more comfortable, reclines, and has storage. It was worth the money. You can also see the cheap children’s watch I zip tied to the stroller. We don’t wear watches, this was easier that getting out phones. Also I made a stroller tag (picture of McQueen with Teddy’s Stroller printed out and laminated) that I zip tied to the handle – both to allow us to easily identify our stroller, as well as to prevent anyone else from accidentally taking our stroller.

I did most of T’s diaper changes in the stroller. Found an empty corner, situated ourselves so nobody could see, and did it. Cleaner than changing tables in bathrooms.

I bought a stroller fan and it was the best money I’ve ever spent. It’s actually not a stroller fan, but a larger clip-on fan. We only used it for a few hours every day, but it was NICE TO HAVE.

The best thing I did was print out maps of the parks in advance. For Disney parks I used Kenny the Pirate’s maps (google him). They’re clear and better drawn than the official maps. And they have the name of each attraction written ON the attraction on the map, so you don’t have to use an annoying key. Then I circled the things we wanted to do, made note of any time-sensitive plans we had, and wrote down anything else I thought important… then laminated them. :)   A page protector would work just as well. Those maps were awesome.

Meals: Some days we wanted to leave GKTW before they were open for breakfast. Most days, we did not come back for lunch. A few times, we didn’t make it back for dinner. Walmart is just down the road – we stopped and picked up easy breakfast foods (instant oatmeal and frozen breakfast sandwiches), sandwich fixin’s, chips (for Teddy), granola bars, cheese sticks, and Gogurts. And a case of bottled water. I froze most of the water. Every day, I packed Teddy’s cooler with his meds and food and an ice pack. And I also packed a Family cooler, with 2 frozen water bottles, a sandwich for everyone who eats orally, gogurts, and cheese sticks. I also packed granola bars in the backpack. We pulled out the granola for midmorning snacks, had our sandwiches for lunch, snacked on chips or nuts or bought snacks in the afternoon, and bought dinner if we weren’t back at the Village. Bringing lunch cut down on our expenses and also gave the kids some “normal” food to eat. I do wish I’d done more planning for snacks and dinners, though – we ended up eating some pretty crappy foods. :)

We started out each day with 4 water bottles: 2 from the fridge, 2 frozen in the cooler, and 2 frozen and just loose in the backpack. This wasn’t nearly enough, we still bought drinks, but it was a good start.

While I’m talking about meals – we did want to have dinner at one of the restaurants at EPCOT. Most of the restaurants are buffet-style. Teddy, as a transplant recipient, cannot eat from buffets. (Of course he barely eats orally anyway, but he does chew on some foods and we like him to participate in mealtime with us.) When making advance dining reservations at Disney restaurants (and, I assume, Universal ones), there is a place to mark if you have food allergy concerns. Our concerns were not with allergies, but there wasn’t a “my kid can’t eat off the buffet” option, so I selected that. When we arrived, the chef came out to talk me, and I explained the problem, and she said it was not a problem at all to bring him food from the kitchen that had NOT been out to the buffet yet, which was exactly what we wanted. :)  (I had checked in advance to make sure this would be OK, so I knew going in that it would be fine. My understanding is that they can do this at ALL buffets. The Chef walked along the buffet with me and I pointed out food I thought he might enjoy, and she brought out his plate for us with fresh foods.)

I’ve read a few disappointing reports from Wish families who don’t feel that their trip was special. I don’t know what the difference is between our experience and theirs. I will say that getting over any shyness about wearing/using the special passes and buttons is key to getting special treatment. People don’t know you’re on a Wish trip if you’re not wearing your buttons. We also didn’t really EXPECT special treatment, so any time we got some, it was fun and special. It’s not really like people went out of their way to sprinkle Fairy Dust on us or anything… but when we gave people the opportunity to go out of their way for us, they often did.

Get the Stroller as Wheelchair pass. You can still park your stroller any time you want, but if it makes it easier, you can bring it in line. We liked having it in line to keep T from licking walls and to keep him a bit separated from other people and their germs. And, let’s face it, awesome seating at shows. But looking up in advance how each ride worked with wheelchairs might have been helpful. We got great seats at one show, for example, but it took 30 minutes to get out of there afterwards because there was only 1 elevator.

Be kind. Be kind. We saw several of the same Cast Members at Disney on our different days in different parks. They remembered us. Happily, they remembered us because we were kind and fun and polite. Not everyone at Disney is nice (guests). YOU be nice. Being nice and making friends is also your key to a better parade and fireworks experience. People WILL try to shove in at the last minute before parades. If you’ve befriended those around you, you form a loose “team” that prevents those last-minute shovers from shoving in in front of you. :)

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Teddy’s Make a Wish trip to Disneyworld

It was super awesome!

I’m posting a few pictures here, but here’s the link to the album on Flickr if you want to see more. Not too many more, but a few more.

I’m working on a post with tips for Wish families.

We had a blast. Teddy had fun, Genna had fun, Wally had fun. I had fun. Randy had fun. We all had our frustrations, too, and it was far, far too short, but it was fun. And tiring!

Genna Sophia

Teddy Pooh Friends

Carousel

Dumbo

Cars

Mickey

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Eventful Day

Well…

It’s taken me long enough to get this post finished up, yikes.

Thursday morning, super early (like 3?) Teddy woke up absolutely struggling to breathe. He had retractions (where your chest goes in instead of out) and was wheezing in his throat. I watched him for a few minutes and it didn’t get better and he was really really struggling. So I woke Randy up and got his opinion. We both agreed it seemed serious and I was not comfortable driving him to the ER myself. So we called 911. I, frankly, was worried about the Enterovirus that’s going around (he’d had a cold for a day or so) and not being certain how quickly it could get bad in an immune suppressed toddler.

When the EMTs came, they said his lungs sounded fine and it sounded like he might have a bad case of croup.

So, yes, I called 911 over croup. But seriously, the child could not breathe.

The EMTs thought he needed to go to the ER, but we declined to accept a ride from them. The doctor at the ER (same one who did Teddy’s stitches) said he had moderate croup, he was glad we’d come in, and it would not be likely to get better on its own, since the cold air hadn’t done much for it. He said it is absolutely possible for a kid’s throat to swell up so much that they actually cannot breathe, which I didn’t know. He got approval from Iowa City for a big dose of steroid and off we went…

to the other hospital in town for his previously-scheduled skeletal survey. He’s had some concerning labs (really high alk phos again) and has been reporting pain in his limbs, hands, and toes. So, that combination evidently can be pretty concerning. So… skeletal survey, it’s a series of Xrays. He hated it, but got over it pretty quickly. He was mostly scared, and no matter how many times I tell him “no owies,” he just doesn’t really believe me. (Though I’ve never lied about it, I think he and I might have different definitions of what constitutes an “owie.”)

The skeletal survey looked good, so we’re still looking for a cause of the pain + high alk phos. There are a few labs still outstanding that might shed some light on what’s going on.

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Clinic Visit

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

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

We discussed…

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

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

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

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

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

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

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

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

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

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Update on Mr Teddy

I feel like we don’t have much to update! That’s a good thing!!

- Teddy’s, um, crazy busy, even for a two year old. He’s like… a 2 year old on steroids, except our hospital follows a steriod-free protocol. Thank God, because I don’t think I could handle him on Prednisone. He’s just like a tornado. And I know you’re saying, oh, all toddlers are like that. No, other moms of toddlers, other moms of multiple toddlers, other moms with 5 and more kids, have all basically chuckled at Teddy and said something like, “wow. He’s crazy busy.” He also doesn’t sleep at night. I blame the feeding pump for part of that, and his metabolism for the other part.

- We’re waiting to hear back from Genetics. Long story short, I thought Genetics was doing things they weren’t doing (mainly because they said they’d do them, and then didn’t). Then in June, we went back to see them and to make it clear that we did want to proceed with the remaining test they hadn’t done. When I walked out of their office, the plan was: get approval from insurance, draw labs the next time we were in Iowa City a few weeks after that appt, then someone would call me to let me know how long the test would take, and then someone would call me with results. So when we were in IA City again, nobody had put in the lab reqs for the genetics testing. Sigh. Eventually someone brought it down, and then 6 weeks later I still hadn’t heard anything, so I started calling. I got voicemail. I left my cell phone number. They called back and left a message on my home number saying that *they hadn’t yet done anything with his sample.*  Then started a series of phone calls featuring Me Being Very Irate. The doctor himself returned my phone calls and we exchanged some words. He claimed there were no labs in the US that could do the test we wanted, so we’d have to send DNA from our whole family to this guy in Canada at a research lab and it would be 2-3 years, but we’d finally have an answer as to what is causing the interesting liver symptoms. Considering that I had previously expressed my desire to do ONLY the one test (for lafora, because both of his liver biopsies have come back suggesting lafora) and not go digging into his or anyone else’s DNA, I was a little appalled at this suggestion and decided to move his care to Omaha. They actually discussed options with me on the phone, and that conversation helped me find 2-3 labs in the US that could run the test for lafora, which I passed along to our doctor at UI, along with expressing my disbelief that I could find this with Google and he could not. Sigh. So… the DNA was sent off to the lab 4 weeks ago and we should have an answer in another 2 weeks.

Every time someone asks me how he’s doing, I say he’s doing great, but inside I’m really stressing about these results. :)

- That said – he’s doing great. Labs continue to be acceptable (NOT great. kidney function is great, everything else kind of flops around close to great).

- He’s started feeding therapy. I’ll update on that a bit later. :)

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