Our Teddy Bear's Journey

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

January: The Month of Appointments

Nobody has been able to coordinate appointments for Teddy in January, so it was quickly turning into The Month Of Appointments. Honestly, we were going to be driving to Iowa City for planned visits more often than at any point in his life during January. But, I reduced our load a bit now. 🙂

When we saw GI in December, we agreed to give their plan a try. It certainly made sense, and seemed like a great first step, something to try before delving into more invasive procedures. Their plan was to pull out all the fruit and simple carbs from his diet, and reduce his water to a more age-appropriate level. (Most kids his age need 1 liter of fluid; he gets 1.7 liters to keep his kidney happy.) Nephrology (kidney) agreed we could try that, slowly, and with lots of lab monitoring. Keeping the kidney happy is Job One.

So I was supposed to reduce the water by 250 mL for three days before his next scheduled lab draw, then if that seemed to be OK with the kidney, we’d repeat by reducing ANOTHER 250 mL before the NEXT lab draw. Well…. his next scheduled lab draw was three days after his tonsillectomy and I wasn’t really going to reduce his water during that time period. So, fine, I figured we’d just put it off to the NEXT scheduled lab draw, which is coming up on Monday (12/30). But now he’s got this UTI and the LAST thing I want to do right now is a) reduce his water and b) potentially piss off his kidney.

His followup with GI was scheduled for 1/16. Just doing the math on this – 10 days of antibiotics for the UTI then another culture puts us to 1/4 on the antibiotics and 1/8 for culture. He’ll get labs on 1/7, and 1/14. I could in theory get in the first reduction of fluid, but not the second. Considering that this was sort of a major part of what we were following up with GI about… the appointment seemed rather pointless.

So I’ve cancelled that, and saved us a trip to Iowa City this month. (Hopefully. I don’t know how often we’re going to be back to see oncology and the nephs at this point.) I figure once we have a solid game plan in place with oncology and after I’ve talked to nephrology, we’ll develop Plan B for this fluid reduction and I’ll reschedule the GI appointment – HOPEFULLY to coincide with a day we’re already in town!

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Christmas News: Drug-resistant UTI and Pathology results

The nephrologist called us on Christmas Day with news. He said he knew some parents would not appreciate a Christmas Day phone call and he likewise knew that I was not one of those parents. Which I appreciated. Because I WANTED him to call!

The final culture results from Teddy’s urine finally came back, and it’s growing enterobacter cloacae. It’s a multi-drug resistant bundle of awesomeness. Hopefully this explains the excessive clinginess. I mean, I love holding my babies, but for the past week, I’ve *not* held Teddy for a total of about 3 hours. All week. Not 3 hours a day. 3 hours in the week. Daddy can’t hold him. Only mommy. And all the time. He doesn’t really play much, just wants to be held. Sometimes a wrap or the mei tai will be acceptable, but many times, it just mommy’s arms. Not mommy’s lap. 😦 And I mostly attributed that to post-op pain, but he’s really probably been a ball of misery.

So a UTI in a post-kidney transplant kid is nothing to be trifled with. We’d originally been told he’d be readmitted for IV antibiotics, but the plan now is to try treating at home and see how it goes.

And the preliminary report on Teddy’s tonsils indicates EBV (epstein barr virus) in the tonsils but no lymphomas. That’s good (no lymphomas) but evidently the EBV presence is concerning. We have an appointment with oncology on the 2nd and will find out more, and possibly do a PET or CT scan that afternoon (or later) (I honestly can’t imagine doing it that day since it’s sedated and so we’d need to withhold food/fluid, so we’d need to know in advance…). We’re also lowering his immune suppression, to hopefully allow his body to do the work of fighting the EBV. So we’ve completely stopped one of his suppressants (Imuran) and reducing the level of his other (Prograf) by half. Yikes. Yes, this does put his kidney at risk. It’s a balancing act.

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Back in, back out

Well, by Friday, Teddy was only peeing less than half of his normal amount, more like a fourth. His temp, which had been more or less normal for a day ish, began to climb and climb even after I gave him Tylenol. He’d been having increasing trouble keeping his food in.

So, I called. Nephrologist said he preferred that we come in. So… at 11:00 pm, in we went!

All of his symptoms could have been nothing, could have been normal after tonsillectomy plus side effects from the pain meds. Or they honestly could have been early signs of something bad, and we HAVE to pay attention to potentially early bad signs.

So, we checked various things. Labs mostly looked good, which was a major relief. Did a urine culture (which takes 3 days), got him a fluid bolus. Hung out. He mostly slept, including during the day.

Sunday, we were cleared to go home. Then the resident came in and said that his urine was growing stuff, too early to tell what, and Nephrologist preferred we stay another day. (A uti in a transplant kid means inpatient iv antibiotics.) Ok. So I shower, start our laundry, we hang out, eat lunch. Nephrologist stops by and says we can go home after all. He’ll call if we need to come back Monday.

So… we drove home and got to des Moines JUST in time to catch Wally’s first guitar recital!

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Misc Pictures

This is how we roll
This is how we roll.

Snuggling at Home
Back at Home

Snuggling at home
This was Thursday afternoon. From like 1 until 4 or 5. Awesome.

Many of Teddy’s meds come with scary warnings.
Drugs

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Tonsillectomy and Adenoidectomy

We were admitted in the evening on Monday (12/16) and mostly spent that whole night waiting for someone to put in an IV. Teddy’s, uh, got a reputation. For being adorable and actually VERY cooperative, but for having extremely challenging veins. So there’s a really short list of people who can/will start an IV on him. And, happily, everyone adheres to a “two tries and I’m done” philosophy, which I agree with, but which also means that after two tries, we have to figure out who else to call. So, it took three tries, two different people, and a good number of hours waiting, since we arrived just before shift change.

We also spent some time chatting with the Vozzas, who were there for Cooper’s transplant – exciting!!

The OR staff came to get us right on time, and right after they came for Cooper. And they put us next door to Cooper in the pre-surgery waiting area, as well. At this point, I started to feel a bit like a creepy stalker.

Gen Gen! Wawa!!
This is Teddy waiting for OR to come get him from our room at 6ish AM. He wanted to hold the picture of our family. Gen Gen!! Wa Wa!! Da!!!

Cheering for SuperCooper!
Here we are, cheering on Super Cooper.

An hour and and half in the small pre-surgery waiting room with a toddler who *must* explore is a challenge. He did NOT want toys. He didn’t want Dora (who he’s adopted from Genna). He didn’t want snuggles. He wanted O-U-T that door. Fortunately, he couldn’t quite figure out how it worked, but he kept sticking one arm or the other out the crack between the door and the wall and strrrreeetchiiiingggg as far as he could. Then he started smooshing his face on the glass and flirting with the women who work in the area. Then he decided to see what was in the cupboards and drawers. Then he decided to investigate the other door – the one that he actually could open. Oops. Oy.

Sleeping

They let me take him back, and they also let him bring Dora. He hated the gas (of course) but he surprisingly did NOT flip out when we walked into the OR room. Every other surgery (that I’ve taken him back for ), he’s just lost it when we walk into the OR – like scared, desperate animal clawing to Run Away. This time, he was really just looking around. I suspected he was plotting the fastest route through the room to cause the maximum amount of destruction before getting caught.

So I ran over to PICU quick to take some stuff to Jamie and was happily surprised to see Blake was extubated and to learn he’d be losing some of his lines later that day! Yay!

Back in our room, the surgeon stopped by to tell me: 1) he had “impressively large” tonsils, 2) the surgery went fine, 3) he did NOT have any more fluid in his ears    Good all around.

Then one of the nurses ran in about a half hour later to say “ohmygosh I forgot to tell you PACU called!” (PACU is Post Anesthesia Care Unit) They had called to say T was there and I could come up. Um, like five minutes ago. So when I got there, I could hear Teddy down the hall and through two sets of doors, and that was with a very sore throat. He had four nurses trying to calm him down.

Sleeping
In the PACU after he calmed a bit

Teddy does *not* wake up from anesthesia well. I mean, he just doesn’t. I thought it was normal, but several floor nurses have now told me that Teddy seems to them to have a particularly bad time. Not physically – he wakes up beautifully, always has. Just it’s hard for him – he’s very very very mad. Very upset. And he takes a LONG time to perk up.

So he literally slept – fitfully – until 5:30.
Sleeping
Sleeping
Sleeping
Sleeping
Sleeping
Sleeping

At that point, he opened his eyes, sat up, climbed down from the bed, and ran for the toy room. lol. He didn’t last long, though.

Play
Sleepy

We stalked Facebook for Cooper updates all day, and eventually ran into Katie and Rob moving their stuff down to the PICU. His transplant went great! Yay!

So… then Teddy got a fever, which as it turns out can be normal for after a tonsillectomy. We watched it and it stayed low-grade, so we went home the next day on the 18th, where we watched his fever go up and down and up and down and up and down…

stay tuned for Part II of this story, lol. (I’ll give you a hint: We’re back in the hospital.)

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This week has really had me down.

This has been one of those weeks. One of those weeks where kidney disease really has me down. One of those weeks where I’m smacked in the face with the realities of living with CKD.

There’s Teddy’s whole PTLD thing – and while it probably isn’t PTLD, the fear that it could be is wearing on me. For all the “worrying about it won’t change anything” that I might say… I still worry. Not overtly, but it’s always there, in the back of my head.

There’s one of our local kidney buddies, just got his transplant in November, back in the hospital and fighting for his life. On Saturday, they weren’t sure he was going to make it. He went from OK to crashing in just a matter of hours, from an infection that started small but his body couldn’t fight because of the immune suppression.

There’s the son of a friend of mine, also post-transplant, with the kind of bad lab results that leave you scrambling for answers and praying that ALL of those possible answers are wrong.

There’s another friend’s son, admitted for something basic and simple but suddenly sliding towards some very scary stuff.

A few other friends and friends of friends waiting on potentially scary news, dealing with scary stuff, staring Terrible in the face.

Ugh. I hate this disease. I hate it I hate it I hate it.

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PTLD and Tonsils

When Teddy’s nephrologist said a few months ago that she wanted to take out his tonsils at some point because they were large (not because they were enlarged, or growing, or anything like that – just because they were large) and they make her nervous, I was kind of not on board with that. Her concern is PTLD, which I’ve blogged about before. It’s the stuff that haunts my nightmares. They feel Teddy might be at a greater risk for PTLD because of his congenital immunodeficiency, and of course peds transplant recipients are at a higher risk to start with. PTLD can often start in the tonsils, so they (and his lymph nodes) are something we monitor pretty closely.

I sat down to do some research on PTLD and enlarged tonsils and here’s what I found:

http://www.newswise.com/articles/enlarged-tonsils-marker-for-post-transplant-lymphoproliferative-disorder

The goal of this study was “to recognize adenotonsillar enlargement in those children at risk for PTLD, thus allowing for earlier diagnosis and treatment of this organ-threatening and life-threatening disorder.”

Conclusions: Adenotonsillar enlargement in the post-transplant population appears to have greater significance, as a marker for EBV hyperplasia and PTLD. When identified either by symptoms or physical exam, plans for adenotonsillectomy should be emphasized. Unlike healthy children who may be observed for regression, pathologic examination of adenotonsillar tissue is necessary to identify early lymphoproliferative disorders.

So… enlarged tonsils are more significant in post-transplant kids, and really can’t just be observed.

http://ndt.oxfordjournals.org/content/25/7/2089.full

Gist of the first page is that PTLD can be difficult to diagnose because there are so many forms.  “in children, the lymph nodes of the Waldeyer’s ring and tonsils are very common target organs.”  Honestly, I didn’t stick with this article all the way through.

http://www.drninashapiro.com/wp-content/uploads/2011/02/shappdf17.pdf

This was an interesting paper, though the survey included is of little use to us because Teddy is still a mostly nonverbal, nonpotty trained toddler who doesn’t eat orally.

Really, knowing that a biopsy is critically important to early identification of PTLD, and early detection is critical to treatment, is enough for me. It goes against my “God put those parts in there for a reason” ethic, but the reasons for proceeding are compelling.

Now with EBV active in his system, and the tonsils larger than they have been, I totally understand and agree with the plan to get them out asap.

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Always a good time in IA City Part II

We last left our hero strolling casually out of the GI exam room and being moved to a nephrology exam room. Because God forbid you stay in the same room for different doctors.

So. Nephrology. His electrolytes are all off. Not a lot, just a little. Some of it can be explained by the Prograf (one of the immunosuppressives), which can cause some off-ness in electrolytes. Some of it can’t. Dr. Z wants us to reduce his intake of phosphorous, but when I followed up with her via email following our appointment, he’s already getting about the amount she wanted him to get. She actually doesn’t want us to take his phos down any further than it is at the moment, because he still needs phos for healthy bones.

Because we stopped his multivitamin, we need to add in Vit D now. His level was 10 something and it should be 35 or so. Oops. Fish oil is all kinds of good for kidney transplant recipients, so we’re going that route, whoo hoo. (We were not able to do fish oil before.)

His weight was… 10.57. Oh, yeah. Uh huh. I really had to struggle to stop myself from saying neener neener – but I shouldn’t get too cocky, it’s only .27 kilos and is HARDLY a trend yet. But even so. I TOLD YOU SO. I knew he would start to gain again as he approached/turned two. Yeah, so a post-transplant period of catch-up growth is technically the norm, and he certainly has room to catch up… but since when has he been interested in doing the norm? I actually have a theory that part of our problem was that we basically forced weight onto him to get him “big enough” for transplant – and that weight he had in March/April wasn’t “real” weight, if that makes any sense.

I mentioned that he had been holding his penis and saying owie before peeing so we ran a urine culture just to be on the safe side – it was fine. 🙂

So.

Then I asked about his Epstein-Barr Virus (EBV) level. On 11/7, the EBV popped up as “detected” for the first time, but as less than 2000. On 11/25, it had jumped up to 6260.

That’s a big jump.

EBV is one of the big risk factors for PTLD, aka, The Stuff Of My Nightmares. PTLD likes to hide in tonsils. Teddy’s tonsils were actually bigger yesterday than they have been (and they’ve been plenty big all along). Dr. Z’s been wanting to take out his tonsils for a while (and I was initially reluctant, but after actually researching it, I was on board), but after the lab results and the fact that his tonsils were bigger this week… that was it. I have a separate post I’d been working on about PTLD and tonsils and how they might come out in the future. I need to update it, but will finish it soon if you have a burning desire to learn more.

So she wanted us to see the ENT that handles all the transplant kids sooner rather than later. Sooner ended up being 3:30.

The plan from here is:
– increase dose of antiviral med.
– recheck EBV in the clinic and wait for results (should have results in a few days), and then also recheck in 2 weeks.
– biopsy the tonsils to check for PTLD.
– If biopsy comes back with PTLD (please no) or the EBV levels are up even higher, he’ll have a CT scan to check his lymph nodes (another place PTLD likes to hang out) and we’ll have a consult with heme/onc. (so she says this and I spent a good 30 seconds wondering to myself why we’d need to see hemotology. um… duh. We’d need oncology.) (at this point, I wanted to stick my fingers in my ears and hum.)

——

We left the hospital at noonish and headed over to the satellite office at Iowa River Landing to see otolaryngology (ENT). They had said to come right over and they might be able to work us in sooner. So, despite my hunger and fact that I’d had a handful of Chex Mix for breakfast, we headed right over. And spent the next 3 hours in the waiting room. Honestly, it wasn’t too terrible. The people watching was awesome. We did a lot of rearranging of the space. Teddy was dissatisfied with the placement of the chairs, and the placement of the tissues (I mean, really – they were IN the boxes – they’re much better outside of the boxes). There were cars out the window. Things to climb on. People of questionable health status to try to make friends with. He gave my car keys to at least a dozen strangers. Distributed magazines to everyone.

Rearranging Rearranging

The ENT was super nice. She good naturedly said that she doesn’t really usually let other departments boss her around to this degree, but when transplant says they want a kid’s tonsils out and they want them out right now, she basically does what she’s told. She did say that the bleeding at 5 days post can be quite severe – especially if is actually PTLD, I guess there can be quite profuse bleeding, to the point that she wanted us to be ready to call 911 if it seemed life-threatening. More ear plugging and humming there.

They essentially made room for us in the schedule. Her first available was in February, but his surgery is Dec 17.

I’m really not looking forward to it. I’m also trying to come to terms with removing yet another body part from my boy. We’re up to… five and six? His tonsils and adenoids will be the 5th and 6th body parts he’s had removed? Ugh.

The good news is that since he doesn’t eat orally, he won’t be constantly irritating the scabby area as it tries to heal. So, there’s the upside to the utter lack of oral intake. 🙂

We left town at 6:30 in the morning, and got home at 6:30 at night.

And we conclude with pictures of my adorable boy. He was SO tired waiting for the doctor.

Sleepy

And taking selfies, as the kids call them these days, is SO FUNNY when you’re sleepy.
So funny

Sleepy

So Funny

So Funny

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Always a Good Time in Iowa City

We had a really really long day in Iowa City on Thursday this week.

We started with GI at 9:30ish. GI’s kind of annoying because we actually see a resident, so she comes in and talks to us for a while, and then she goes out and talks to the doctor and then she comes back in with the actual doctor and we basically cover the same ground again. I understand why. But it’s a little annoying. So. The doctor didn’t want to do more invasive testing if we didn’t have to. Basically any options to proceed from here involve things that we don’t really want to do. Unless we really need to. But his doctor (a different one than we usually see) suggested something nobody else has suggested OTHER THAN other moms. Maybe he just is getting too much.

His caloric intake is pretty high for a kid his age. His fluid intake is pretty high for a kid his age (pretty average for a kidney transplant kid, though.) I don’t know how the volume of food he takes in compares to other kids his age, but I think it’s a lot. Evidently, there is something called “Toddler diarrhea” which is kind of a normal kid thing to have. So GI wants us to cut back on simple carbs (not like he gets a lot, but I have relied on fruits to increase his calories without increasing a lot of bulk, and because his veggies were so limited before transplant. (And we haven’t introduced a whole lot of new foods since then, what with all the diarrhea and removing various foods and taking out anything new to see if that helped, and all the diet screwing around I’ve done.) So his current blends usually have two fruits every day.

The GI doctor says to me “can’t you just replace the fruits with vegetables?” Well, it’s not that easy, what with veggies being generally lower calorie. But ok.

His other suggestion was to limit his fluid intake. This is where I start understanding why Dr. Jetton didn’t want to send us to GI pre-transplant. “They don’t understand our kids and just tell us that they need less water.” Yeah. Teddy gets the water he gets because it keeps his kidney happy and a happy kidney is Job One here.

So I said I wasn’t comfortable with that, so he checked with Dr. Zepeda (kidney doctor). Then he came back and told me that Dr. Zepeda was ok with going down by 250 on his water for 2 weeks and then checking labs. Okaaaayyyy….

Well, what Dr. Zepeda actually said was that it was OK to try reducing his water by 250 mL THREE DAYS before labs. I’m more oK with that than with going two whole weeks. And she also said she thinks it might possibly be OK – before when he was having trouble with dehydration, his kidney was still doing a lot of wasting but it should be better now.

So we’ll see. I’ll update on the rest of the day later.

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Love

Love

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