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.

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!

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.)

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.

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.