Our Teddy Bear's Journey

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

Today’s Clinic Visit

I might be more hazy on what happened at today’s clinic visit than I am about any other appointment ever in my life. I’m so tired. So tired. It’s been a remarkable week of just jam-packed stuff – stuff out of the house, stuff in the house – and extremely late bedtimes for Teddy, who’s all off-schedule from his ER visit.
Then the big kids were TERRIBLE. I mean, TERRIBLE. And Teddy was all wound up. It was a small room full of noise and distraction.


So we started out by arriving a full half hour early. Usually, that half hour is reserved for playing outside, but it was raining, so we decided to play the computer game in the waiting room. Then they called us back for labs early, totally ruining that plan. Labs were a nightmare, evidently the experiences in the ER made for a huge step back in Teddy’s anxiety about labs – and it took three pokes, mostly because he moved so much, he yanked out the needle the first two times. (I mean, he didn’t yank it out, but he managed to writhe so much despite three people holding him down that it came out.) Then we went back to the waiting room. For an hour. 45 minutes past our scheduled appointment time, we were taken to the education room (NOT an exam room) to meet with the nutritionist, who came in 20 minutes later (1:05 past our appointment time). Kids are being pretty good. Education room has a VCR, they’re watching Scooby and coloring/drawing.

Nutritionist approached me with what she called a “compromise.” That I would start fortifying the breastmilk Teddy gets with infant formula. Um… no. I ultimately told her that I just wasn’t going to, period. Not to make her life more difficult, and I know that she’s in a tough spot between the doctor (who’d like us on formula 100%) and me (who is not going to do that). But, no. She did not seem super happy about that, but I was too tired and pissed about the lateness to really work up too much sympathy. We agreed that I’d switch the water he gets overnight to almond milk or rice milk or some other milk alternative. Not cow’s milk, she did know I wouldn’t go for that. Frankly, ANY choice makes my life more difficult, but I think I’m going to switch to 1200 mL bags (we have 500 mL right now, so I have to do a middle of the night refill) and then I’ll have to rig up some sort of insulated bag for it. Until I get that in place, I’ll have to get up at 3 am when the bag’s empty and get out of bed to get the jar from the fridge.

So after this conversation, the kids were nice and settled in. We had the toys out of the bag, snacks out, coloring pages out, crayons, there were Teddy’s trucks all over. Jackets off. And then we had to move to an exam room. Ok. Pack up everything. Grab everything. Turn off the movie. And then all hell broke loose, essentially. Genna had been absorbed in her Dora activity book, but didn’t want to get back to it in the new room. Wally had been reading, but wanted to play Genna’s iPod now. (His own iPod, of course, I had charged up in anticipation of the day, but he took off the charger yesterday and used and the battery was now dead. Genna doesn’t really have an iPod, but she and Teddy sort of share the really old one we still have kicking around here.) Genna wasn’t using her iPod, but neither she or Teddy thought Wally should touch it. Teddy, meanwhile, had settled in with his trucks, but now wanted to run up and down the hallway. Genna starts playing with the curtain, and demanding that Wally play with her on the chalkboard. Wally doesn’t want to (which is fine, she wasn’t being nice at all). Genna starts making the exam table go up and down. Teddy’s peed in his pee bag, but it came undone – honestly, I knew I’d let too much time pass, but he was so chillaxed that I’d hated to bother him.
OMG.

During all this commotion, I tried to have a conversation with Teddy’s nephrologist. There were multiple violations of the When Mom’s Talking To A Doctor, You Be Quiet And Play Nice rule. Enough violations that they didn’t earn a Lego Minifig (their bribe for doctor visits) and they further are not accompanying me to iowa city again until they can assure me that they can behave. That said, we were now at 1:30 past our scheduled appointment time. They had *really good* behavior for the first hour or more. I wanted to point that out to the doctor, and I think I will if this keeps happening. I mean, I don’t mind if she can’t see us until 11:00. But then I’ll sleep an extra hour and a half and come in at 11, you know? If I can get up before dawn and get my kids up and dressed to leave the house at 6 so we can get there to be on time (which means 20 minutes early – you’re supposed to show up for your appts at least 20 minutes in advance), then I don’t think it’s asking too much for that effort to be respected by showing up ON TIME. How can you be behind schedule at 9 am??

So. His kidney function looks great. Prograf level (one of his immunosuppression drugs) was in target range (after being both extremely low and extremely high in the last week). Electrolytes looked good – sodium’s good, but potassium’s too high. Not dangerous, but high.

Liver function tests all elevated. Not as much as they were in May when his transplant got cancelled, but still high. argh.

Her main concern continues to be his weight. Which, again, I just can’t work myself up about. I’m just not that worried. Maybe I should be, I don’t know. Nobody’s really explained to me how this is an overall bad thing. How will a lack of impressive gain now impact him in the future? I don’t know.

I do, however, agree that looking into possible NON-DIETARY causes of lack of weight gain is appropriate. Really, anything besides blaming his diet is a welcome change. So, the first step was running some labs to look at things like thyroid function. His TSH (thyroid stimulating hormone) is high, with a normal thyroxine. So normally this might indicate hypothyroidism, but that causes weight gain, so I’m betting that’s not it.

So next step is a consult with GI to discuss whether he has some sort of absorption issue or if they have any other ideas for us. And then allergy to see if he tests as allergic to any foods. Good times.

Advertisements
2 Comments »

Not necessarily “for a reason,” but more “used for good.”

I don’t like the phrase/concept that all things happen “for a reason.” I guess I don’t doubt that all things DO happen for a reason… but I do doubt that all things happen for some big Cosmic reason. That seems to imply that God’s up there with the strings in 100% control of what happens. And that doesn’t jive – in my opinion – with how the Bible portrays God. I believe that people can act outside of God’s plan – but that their doing so doesn’t necessarily foil God’s plans. God having a different sense of time than we do – seeing all times at the same time – means he knows what’s going to happen, what has happened, what is happening, but that doesn’t mean he MAKES it all happen. Just like how, in some circumstances, I know exactly what my kids are going to do – but that doesn’t mean I make it happen.

I do, however, strongly believe that God can use all things for good. ALL THINGS.

When my friend Abby’s first baby was born, she was born VERY early, and ended up needing oxygen for a while even after she came home. It was very scary for them, I’m sure. I didn’t know Abby then, but I know that having a baby with lung issues would scare *me.*

In addition to her health concerns, this baby also developed the lovely “breath holding spells” that Teddy has. Which scared her mom half to death, as you’d imagine.

A few years later, Abby and I meet and become friends. God clearly had a friendship in mind for us two and I’m so blessed to have her in my life. I have not been nearly the blessing to her as she has to me.

Fast-forward to last weekend. Teddy stops breathing and loses consciousness while crying. Yeah, I was scared. But I also knew – because I know Abby and we’re friends and we’ve spent countless hours talking about our kids – that that is a thing that some kids can do. I was scared, but I wasn’t, you know, completely and totally freaked out.

Since then, I’ve been able to learn from Abby’s experiences with this breath-holding thing, and talking with another mom who’s experienced it with a baby with health concerns was very reassuring to me.

Through her experiences, which doubtless seemed pointlessly scary at the time, Abby was able to be a (further) blessing to me in a time of need. That’s not WHY her baby was born early, with lung issues, and the genetic predisposition to stop breathing and lose consciousness. But it *is* a situation that God was able to turn around and use for good – to benefit another of His children.

I need to keep this thought further to the forefront of my mind. 🙂

2 Comments »

Yikes, Teddy!!

So, yesterday we learned Teddy has a fun new issue. I came home from a birthday party and Randy told me that Teddy stopped breathing a few times while crying. It sounded exactly like what the kids of one of my friends do – it’s a genetic thing that their brain just kind of stops working right when they cry and they stop breathing. Once they pass out, they start breathing again.
Then yesterday evening, he tripped over a toy and fell on his butt. It made him upset and he started to cry and get up to come to me. You know how kids, when they really start crying, have that first cry, and then there’s that big gasp before they go on? And maybe I’m alone in this, but I have always joked “ok, breathe, now!” Well, Teddy just didn’t. He was trying to walk to me and his eyes rolled up in his head and he literally just face-planted mid-stride. I ran over picked him up (he was dead weight, no movement, no breathing) and shook the ever-loving snot out of him until he started to move again. His eyes fluttered a bit, he looked at me, took a deep breath, then stopped breathing again and turned all limp again. Commence frantic shaking again, consider starting CPR, start yelling at Wally to go call 911, and he popped back up. And then vomited. Sigh.

So I hemmed and hawed around for a while but eventually called the nephrologist on call and asked for advice, and they wanted us to go to the ER and have him checked out. They did labs and an EKG, but everything was ok, and so he just has what’s called “breath holding spells.” (same thing as my friend’s kid, and evidently quite a few kids.) We can expect this to happen any time he gets really upset until he’s 4 or 8. Good times. The ER called it “breath holding” and implied he was doing it on purpose, but that’s not really in keeping with what the “experts” say.

The crappy thing is that, other than shortening my life by a few decades, losing consciousness is a big red flag for a lot of things we have to watch out for with him – including low sodium. Yuck.

Anyway, we had a long night in the ER, but we survived and we did not take an ambulance ride, so that was good.

I continue to be impressed with the ER doctors at Mercy in the children’s area. The doctor last night was very similar to the doctor the last time we used the ER – totally comfortable with calling UI for guidance, not territorial or arrogant about it. (Also, “he’s a recent kidney transplant recipient” is like the Golden Ticket in the ER. Whoosh – into a room.)

The nurses, however, continue to be a weak point.

Teddy’s labs. He needed labs. So first, they say they’ll do it with a finger poke since it was just a CBC. I said, no, there’s also a metabolic panel and a tacro. “Well we could do that with a finger poke.” “No,” I said, “you can’t, because it’ll make the potassium artificially high and freak everyone out, plus I think you’ll have a really hard time getting everything you need with a finger poke.” “Yeah, you’re right, it is a lot of blood.”
OK. SO their ER nurses can evidently ONLY draw labs on a child who is laying down with the parent laying next to them. I had to lay on my side and trap his feet between my legs and then also control his free arm. This was a huge red flag. If you are so inexperienced that you can only take labs with the kid in one specific position, then you probably have no business drawing labs on my kid. The nurses in the clinic and on the peds unit at UI almost universally don’t even attempt labs on him any more. He’s just *that* difficult. But, ok.
So we try it.
Except they had me remove his shirt. And they kept telling me to lay him down. But THEY weren’t ready yet. Man, I’ll lay him down for you, but you get your crap in order first. When you’re ready, then I’ll get HIM ready. He’s 22 months. He doesn’t lay still and wait for you.
So back to the shirt. I had to take off his shirt for them and the room was really cold. I’d just talked to them about his small, deep veins that roll around when you try to poke at them. And I’d just refused EMLA – to much eye rolling – because it’s a vaso-constrictor and will only make it harder. Then they had me take off his shirt in a cold room doing what? That’s right – driving his small veins deeper into his arms because he was cold and that’s how your circulatory system works. Am I the only one familiar with basic physiology here?
So, Nurse #1 ruined his “good” vein in his arm. Nurse #2 tried his left wrist. Then they called Transport. Then instead of transport, another nurse came in. Attempt #3, she ruined his other arm. Attempt #4, she got some blood out of his wrist, then SHE ACCIDENTALLY PULLED THE NEEDLE OUT WITH HER ELBOW. Yep. She got tangled up in the tubing. But they had gotten just barely enough for the metabolic panel and the CBC, though it was hemolyzed so we didn’t get a good potassium. (And the ER doctor was so cute explaining to me what “hemolyzed” meant.)

And I think I annoyed them with my “not intimidated by a hospital” “making myself at home here” ways. I didn’t keep him in his room the whole time. We went for walks in the short hallway. We went for wheelchair rides in the short hallway. We paced the short hallway in the wrap. We explored the cupboards and drawers (ok, yeah, I was semi looking for supplies I could use).

The intake nurse was just annoying. The hospital whose ER we use is the same one we use for labs, and they totally lost his files, so they have nothing on him. The first words out of my mouth with any new person walking in the room were “he’s a kidney transplant recipient.” So this was my conversation with intake:
“He’s a kidney transplant recipient.”
“ok, let me update his records here. Has he had any surgeries?”
In my dreams, I replied with, “No, at UI they’ve developed a revolutionary new technique where they teleport the kidney directly into the recipient’s abdomen. It’s amazing.”
In reality, I said, “he’s had 14 surgeries, do you want dates and details, or just the general gist of what they’ve been for?”
“I need dates and details.”
“OK, December 7 2011, he had surgery to repair his UPJ obstruction in his left kidney. December 9, 2011, he had surgery to put in a Broviac and a PD catheter.”
“does he still have the Broviac?”
“no”
“when did that come out?”
“I’ll get to it.”
“Does he still ahve the PD catheter?”
“No. He doesn’t have ANY dialysis catheters at this point because he has a working kidney, but he went through four catheters total, and one revision of an existing catheter.”
“Ok, what were that dates on those?”

OMG, lady. I have a list here. In chronological order. Do you want to shut up and just let me read it to you, or do you want to keep interrupting??

2 Comments »

Teddy’s medicine bottle collection

image

image

This is getting silly.

4 Comments »

October admission

So… Teddy’s being “off” and his falling down were caused by low (very low) sodium. He also had low potassium.

He currently gets enough salt according to some measures,  and though he’s flirted with low sodium before, it’s always ended up ok. There was some concern that his kidney, much like his old kidney, was not hanging into sodium. However, urine tests showed us that he wasn’t peeing out sodium. (this was great news.)

He just needs more sodium. That’s easy. We had to stay just long enough to make sure that the extra sodium was doing the trick.

Then Saturday labs came back and his sodium was just as low as it was at admission! Argh! We repeated them, and they were fine. So we came home!

15 total pokes during 3 days. Ugh. And more labs Monday.

Leave a comment »

New Rule: Only Mommy puts on Pee Bags

Quite apart from our whole scary false alarm yesterday, we had an interesting clinic visit. And we made a new rule. Only Mommy Puts On Pee Bags.

Last clinic visit, I was holding Teddy after the nurse had put on the pee bag and noticed that pee was literally shooting out the side of his diaper, onto my chest. It was awesome. I held him away from me and let it drip onto the floor (and then cleaned it up).

This week, different nurse, but same shooting pee out the side of the bag problem. But this time, he was sitting on my lap getting labs. THAT was even more awesome. I couldn’t move.

2013-10-17 09.04.37

*a pee bag is a plastic bag with a hole in it that’s covered in adhesive. You tape it around a baby’s parts to collect urine.

1 Comment »

What happened yesterday

Starting Tuesday, Teddy did not seem like himself. I couldn’t put my finger on it. He just didn’t seem right. He woke up from his nap vomiting (unusual) and then was grumpy and irritable all day. He also had some diarrhea. I chalked the vomiting up to increasing his calories, and the grumpiness to being tired.

Wednesday, more of the same. By Wednesday evening, I was very concerned about him. He was pooping, seemed distressed, and he was falling down. But he was giggling when he did it, so I figured it might have been a fun new toddler game.

Thursday morning in Iowa City for a regular clinic day, when we got out of the car and went to the playground, he couldn’t stay on his feet. It was like he was drunk, or he was walking in an earthquake. Or he was dizzy. Combined with the diarrhea (which wasn’t a whole lot!)… I was worried.

His labs came back with very low sodium and potassium. Slightly elevated BUN (so he was a bit dehydrated from the diarrhea/vomiting) but everything else looking good (including the all-important creatinine, which is an indication of kidney function).

So he was admitted for the low electrolytes, since he was symptomatic (the falling down) and since the potassium was low enough to cause concern with his heart.

Then I went to go get our stuff from the car (thank you random stranger who helped me navigate the elevators at the parking garage with the IV pole and our suitcase).

And as I was walking back down the hall, Teddy nephrologist (Dr. Z) was kind of frantically looking for me. He’s going to have to go to the PICU. And have dialysis.

um, what?

So, in looking for answers to the electrolyte problem, Dr. Z ran a whole series of other labs and urine tests. One of them was Osmolality, and I don’t really understand it, but it’s something that looks at the concentration of particles in the blood. You’d expect it to be higher with dehydration, but not as high as his was. So then you start looking at other causes. Hypernatremia? No, Teddy’s HYPOnatremic. Hyperglycemia? No. Stroke? Diabetes? No, no. Ethleyne Glycol poisioning?

So they ran a check on glycols in his blood. And one of them came back positive. Ethanol (or ethleyne or… something like that, honestly I haven’t had time and probably won’t make time to really read into all this). So that seemed to support the high osmolality. And is a SERIOUSLY big problem. Like PICU and dialysis bad. (Dialysis NOT because his kidney wasn’t working, it was. But because that’s how you get this out of your system.)

So enter The Whole World. Like 6 doctors? All in here. Teddy had fallen asleep on our walk to the car to get the stuff. In the Doctor Who carrier. And he was OUT. He usually can be counted on for a GOOD nap after clinic days. And he had his head thrown back and his mouth gaping open. And that *freaked everyone out.* As in, wake him up, please. Yes, as in, wake your kid up from his nap just to prove you can. OK, and he WAS really really asleep. So I took him out of the carrier, and he was PISSED.

Then Genna’s all freaking out (as in, acting out) because it’s been a long boring day and she wanted to keep the dolly that she was playing with in the clinic, but their Child Life and the floor’s Child Life are different, and the play room here didn’t have a dolly and she wanted the chair in the room to be in one particular place, but Wally didn’t understand that because she communicated this desire by crying instead of using words, so then she got more hysterical. It was an awesome hour or so there, but we got through it, and once things calmed down in the room, she calmed down, too. She actually went to the Play Room with Child Life by herself, which she’s NEVER wanted to do before. And she LOVED IT.

So we’re loading up to move to the PICU and then the second set of labs came back. (I would have asked, but I didn’t have to – Dr. Z ordered a new blood draw to repeat all the concerning labs before we leaped into dialysis.) And the second set of labs came back fine.

In the meantime, three or four people are grilling me on exactly what he’s eaten in the last several weeks, what he could have gotten into, what brand of coconut oil we use, what we feed the chickens, where we store antifreeze, what other things he eats. And I’m having to admit that he likes to chew on anything paper-like he finds, so I found him with a wet wipe packet in his mouth (sealed). And he’ll suck on the disposable diaper wipes we use when he’s got diarrhea (I don’t use cloth when he’s got diarrhea in case it’s C-Diff). And he likes to eat diaper rash cream. But in talking to the doctor, when she was asking about chicken feed, and I said I guess, if some had gotten spilled in the part of the yard he’s been in, and he was very fast, he could have eaten a piece or two while I was taking pictures of carriers a few weeks ago… and then she said it’d have to be a cup or two. OK, no. No. Just… no. He doesn’t eat. And while I could see him getting a few drops or a few bites of something down on accident… I don’t see him doing so quickly enough to escape my attention, and I don’t see him doing it without gagging and choking. He doesn’t lick stuff off of his fingers on purpose (I mean, he puts his fingers in his mouth, but he doesn’t dip them into things for the purpose of licking them), so if he got something on his fingers and then put his fingers in his mouth, he would be unlikely to do that over and over. So I was mystified. Honestly.

In the meantime, we had to run a third set of labs because… which do you believe?

Third set, also fine. Total pokes? 11. The transport nurse who did some of his labs said she wasn’t going to come poke him again, she was out of places to poke.

So. NO picu. NO dialysis. YAY.

It has been suggested that they got some of the alcohol they use to clean your skin before poking it into the needle, but it seems like that would cause more false positives than they regularly see with this. Another theory, that I think more likely, is overzealous hand sanitizing by lab employees.

So that’s what happened. I hopped on Facebook right away and got people praying for him (thank you thank you thank you), but I was pretty calm.

So… Teddy’s still here to figure out the sodium/potassium issue. We have a theory and a plan and if the plan works, we go home tomorrow with new meds.

1 Comment »

But it’s not FAIR!

You know, normally I can sit with Teddy through nearly anything and not cry. Bad labs. IV placement that takes over an hour. Wound debridement. Punch skin biopsy. Ultrasounds and Xrays that involve holding him down and listening to him scream for a half hour or so. I can get into a mental place where I just do what needs to be done and get through it. It’s the same mental place I worked on when both Wally and Genna were going through their Screaming Through BathTime phase.

I mentally focus on HIM and the medical people. What can I do to help the medical people get this done faster? What can I do to help Teddy calm down? Barring that, what can I do to reinforce to him that his feelings are valid, that I hear and understand him, and that I’m here for him and it’s OK to scream and cry? We’ve walked out of terrible IV placement sessions to be told “gosh, I love parents like you. You make this so much easier and faster by helping hold him and comforting him at the same time.” Which is nice to hear, because sometimes I feel like I could be doing better. It’s also somewhat confusing because I can’t picture another way to handle it. I suppose some parents just aren’t involved? Or are over-involved? I don’t know.

(Note: I don’t do their jobs for them. I do not feel it’s my responsibility to hold his arm still while someone’s trying to put in an IV in it. I can hold HIM still. I can hold his body with my arms and I can hold his head with my hand and do so lovingly and also firmly. But I won’t hold the arm down for you. If you can’t do that yourself, you get yourself a helper. I’m busy.)

But I have to watch the thoughts I let go through my head during these times. I have to be able to SAY things like “I know you don’t like it.” and “Ouch! I don’t like this! I want you to let go of me!” and “I know, this is no fun. You want to get down. You want your arm back.” without actually thinking about what I’m saying.

It’s possible. I focus on the words themselves, not their meaning. Because as soon as I start to really think about what I’m saying, then I think about what’s really going on. And how many times – how many times – we’ve been in the same position. I start thinking about how NOT FAIR this is. And then I start focusing on that. But this isn’t fair. It’s NOT FAIR!!!

IT IS NOT FAIR.

 

And that’s what starts the tears from MY eyes. It’s not fair. It sucks. Seriously, seriously sucks.

It’s the times when I stop just accepting Teddy’s kidney failure as just The Way Things Are and start thinking about The Way Things Should Have Been, or The Way Things Should Be or The Way I’d Like Things To Be. That’s what’s hardest for me – not that our life is so hard, but that his life is so much harder than I think it should be.

Those are the times I want to tell God that I think He and His Plans Suck The Big One. 🙂

So I usually allow myself to have those thoughts once we’re back in the car, just for a few miles, I let myself dwell on how much this all sucks. And sometimes I let myself entertain thoughts of the future… thoughts of the inevitable next transplant, thoughts of rejection, thoughts of the various viruses, cancers, etc. that are an ever-present risk. Sigh. And then I turn on the music and let it all go. There is nothing I can do about it.

1 Comment »