Our Teddy Bear's Journey

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

Random pictures of how adorable Teddy is

Who doesn’t want to see pictures of how adorable Teddy is?

20131225_061849 Sleepy Bear Sleepy Bear
Sleeping

Snuggly Bear
Snuggling

Sleepy Bear
Being Silly

Shadow
Waiting for Daddy to come home

Teddy Taking BP Machine for a Walk
At Clinic, taking the BP machine for a walk

Bath
Taking a Bath. This is Teddy’s first honest to goodness bath in the bathtub sitting down. This was HUGE in our household. (Genna’s not taking a bath, FYI. She’s going for a swim. Hence the swimming suit. She hates baths. Loves swimming in our tiny indoor pool. Whatever.) (And Teddy’s not allowed to drink bath water. He hadn’t yet figured out how to successfully get the water to his face at the time this picture was taken.)

Teddy Bath
And he repeated it the next day, without Genna being there to boost his confidence.

Teddy Snow
Playing in the snow

Teddy Snow
Five seconds later.

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Emergency Preparedness for those with Medical Needs

My purpose here isn’t to discuss hard-core prepping. I’m not going to give you secrets to stockpiling your prescription meds in the event of widespread social unrest or an EMP. My purpose here is to help those with medical needs, or those with kids with medical needs, to prepare for those everyday emergencies, like bad weather, car accidents, medical emergencies, etc. For ease of writing, I’m going to proceed as though talking about kids with medical needs, but obviously the same principles would apply to adults.

I personally believe there’s no excuse to not be prepared for the unexpected. I’m the type that has Go Bags packed for every member of the family, that runs fire drills at our house, that has rendezvous points established with family members, and that keeps emergency supplies in the car. For my husband’s birthday this year, I’m putting together a Work Emergency Kit. 🙂  We’re prepared. But there’s no reason not to be. And, particularly when you have medical concerns to take into consideration, preparation for every day emergencies is even more important.

The first step is to take a minute to list everything your child needs to survive 24 or 48 hours.

For Teddy, that list would be:

Water, Salt, Meds, Feeding pump (though in a pinch we could make do without), feeding tube extensions, syringes of all sizes, diapers, a few changes of clothes, blended food.

Second, thinking through your daily life, list some emergencies that might arise. In my life, that list would include:

– Unexpected hospital admission
– Car accident leading to lots of extra time away from home that we weren’t planning for
– Bad weather heading to/from Iowa City leading to unexpectedly needing to stay overnight away from home
– Loss of power
– Loss of power combined with bad weather making it difficult to leave the house

For other families, that might include:

– Emergency at school
– Inability to get home from school or work
– Evacuation due to fire, expected hurricane, etc.
– Earthquake

 

Third, and this is deceptively simple, figure out how you’ll take care of all of those things listed in Step 1 if anything in Step 2 happens.

I’ll take one example from our list – needing to unexpectedly stay away from home on a clinic day.
Water: I always have his daily allotment of water with us on clinic days, and I always have two bottles of water for me, so in the event I needed a second day’s worth of water for him, I’d have it.
Salt: I bring his salt for clinic day, and don’t worry about bringing the salt for overnight or the next day. If we have an emergency, missing his salt for a day isn’t going to kill him.
Meds: I obviously bring his morning meds with us, since I have to give him those after labs at the hospital. I also bring his evening doses if the weather is iffy, just in case.
Feeding Pump and Gtube extensions: I bring his feeding pump and cord and two bags with me in what I call my “car bag” that I pack on clinic days – it’s a bag for stuff for the car. I also bring one of each type of feeding tube extension in the “Car bag” (in addition to whatever is floating around in my diaper bag, and in addition to the extensions I pack specifically for that day’s appointments – his bolus tube extension that goes in the small insulated bag with his food and the med extension that goes in the syringe holster with his meds).
Syringes: Since we use syringes throughout the day, I always have what we need with us.
Diapers and Clothes: It’s no secret that I keep a suitcase packed for a week in the hospital in my car at all times. So that takes care of clothes and food for me.
Food for Teddy: On clinic days, I bring Teddy’s entire day’s worth of food, and I also pack in the cooler a second day’s worth of food. This is both in the event of a travel emergency as well as in the event of an unexpected admission.
Misc Medical Supplies: I don’t go anywhere further than walking distance from my home with Teddy without bringing his diaper bag. In his diaper bag is a plastic zip close bag full of those bizarre things we almost never need. A catheter and tape, in case of Gtube breakage. A slip-tip syringe in case I need to flush his Gtube or in case it gets pulled out. Lubricant. Gauze. Tegaderm. A small first aid kit. Zip ties, velcro ties, and a few caribiners (which are useful for securing feeding pump bags in the car, or IV bags, etc.). Bleach wipes and hand disinfecting wipes. I used to carry a ton of emergency PD catheter supplies, as well, but we don’t need those any more.

 

Fourth, and this is the most important step here, actually DO the things you need to do to be prepared. Don’t just think about how you could be prepared. Actually do it. Actually go pack an emergency bag you could grab in a hurry if you needed to. Actually write a list of the things you’d need to grab that are not pack-in-advance-able and actually post it where you keep your medical supplies. Actually send a few days’ of meds along with your spouse to work just in case he gets stuck there overnight.

 

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Feeding Tube Awareness Week

Today kicks off Feeding Tube Awareness Week.

 

 

So let’s talk about the feeding tube. Teddy has a feeding tube. He got it when he was not quite 3 months old, because feeding was getting more and more difficult and unpleasant, and he was starting to lose an absolutely unacceptable amount of weight. Teddy’s particular brand of kidney failure meant that his body peed and peed and peed and peed like crazy. Your kidneys filter out garbage, and they also decide how much fluid to retain in your body, and how much salt and other electrolytes to retain. Teddy’s kidneys didn’t do any of that – they just peed out everything. So Teddy needed more fluid and more calories than other kids his age, in order to keep up with what his kidneys were dumping out.

The problem with that is that kidney failure also makes you pretty nauseous. So even though I was feeding him basically around the clock, we just could not keep up.

Life got so much more pleasant after the feeding tube. No more force feeding. I could feed him as much as he wanted orally and then just put the rest in the tube. It was awesome.

And even though he eventually stopped eating orally entirely, and now we have a likely huge long road ahead of us to get him back to all-oral eating, I don’t regret it at all. I can’t imagine how much harder life would have been thus far if we didn’t have the feeding tube. It has, quite literally, kept him alive. It got him his transplant (without the feeding tube, I doubt very much he’d have hit transplant weight yet).

It is, at times, a major hassle. I won’t pretend I don’t long for a kid who just eats food like regular kids. I won’t pretend that I relish preparing a feed every 2 hours, every day, and setting up a feed for overnight, every night. I won’t pretend that I don’t wish that I could just hand him a sliced apple for a snack, instead of having his snack time involve two giant syringes, a blender, and a plastic tube.

But the upsides outweigh the downsides for us. By a long shot.

 

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Let’s talk about the GI system. In other words, it’s a post about poop and vomit.

Teddy’s GI system is a wreck.

I mean, you start with a kid on prophylactic antibiotics for his first year, and then add to that at least 6 rounds of heavy-duty IV antibiotics for line and bloodstream infections. Add in some 10 abdominal surgeries and one brush with sepsis, and you’ve got yourself a digestive nightmare. If he started out life with healthy gut flora, he certainly lost it all pretty quick.

He started out on probiotics, but after his first line infection, I read a few case studies where patients with permanent lines developed infections that were traced back to the probiotics they were on. After discussing whether the probiotics were a good option moving forward, his doctors and I agreed we’d take the cautious route and hold off for a while. Once his lines came out shortly before his first birthday, we resumed probiotics, and he’s been on them ever since, save a month or two after his transplant.

Kidney disease makes you nauseous. Particularly with kids, it tends to make them not want to eat (do YOU like to eat when you feel sick?) and it tends to make them vomit. Teddy vomited every day, 8-12 times a day, from about 2 weeks old until a month or so after his transplant. That’s 21 months of daily vomit, 8-12 times a day.

That’s a lot of puke.

I mean, it’s puke in the car, at the grocery store, in the parking lot, at church, at friends’ houses, at the houses of family members, at the doctor’s office, at Target. Everywhere.

About a month after his transplant, Teddy’s vomiting started showing improvement. Slowly, slowly, he puked less and less. At this point, he vomits infrequently, but still occasionally. Probably 1-2 times a week.

Before his transplant, Teddy had funny poop. After I started him on solid foods (through his tube), he never really got that Toddler Starting Solid Foods poop. It was always just on the edge of being diarrhea. We blamed the meds and the kidney disease and hoped it would improve after transplant. hahaha.

So, immediately after transplant, the diarrhea got terribly worse. All liquid, all the time. And I mean, ALL the time. It was so bad that his Prograf levels (one of the immune suppressants) were really unstable. We’d bounce from undetectable (they found no drug in his system) to somewhere around 20 (which is really high) over the course of a few days. And then back down. And then back up. I don’t remember what his target drug level was at that time, but he literally never hit it. Not once. It was either much much too low, or much much too high. And diarrhea affects Prograf levels.

So we switched around one of his other meds, and though that helped get the Prograf levels stable, it didn’t actually help the diarrhea.

So since Transplant, while his vomiting’s been improving, we’ve basically just switched to diarrhea. Teddy poops a texture ranging from all liquid to sort of like really watery grits, 8-14 times a day.

GI had us try reducing his water. He was on 1.5 liters of water every day, since anything below that level had made his new kidney angry. One of his post-transplant admissions was for severe dehydration when he was on just 1 liter a day. So we reduced his water. First to 1.25 liters a day, then checked labs. His diarrhea got better – down to just 4-5 times a day, and generally less watery. Labs looked great. We were thrilled. That was a few weeks ago.

After 4 days of reduced diarrhea, he started back exactly where he was before we reduced the water. 8-14 times a day, ranging from all liquid to watery grits. Ugh. Ugh ugh ugh.

For the last week, I’ve reduced him to 1 liter. First, I reduced him to just 1 liter through his tube, and didn’t count the water added to his food or the water he drinks. Then, I started counting the water added to his food (which is just 100 mL a day). Then, I started estimating how much he was drinking and taking that out of his overnight liquids. And still the diarrhea. The one positive change is that sometimes in the morning, he’ll bust out with a formed stool. It’s happened 3 times now. In his life. Oh, and he USUALLY doesn’t poop overnight any more, whereas he used to poop a good 8 times overnight.

I don’t know what to do at this point. We’ve also removed all fruit from his diet, but with no improvement, I’m not eager to continue eschewing an entire food group. He gets no sugar. No juice (because obviously that would be fruit). He gets enough, but not too much, fiber. Sigh.

So, we have a followup with GI scheduled for the end of this month. We’ll see what they have to say.

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