Good stuff in December - LC

Sorry to have (re)posted this multiple times. I kept hitting Ctrl-S instead of Ctrl-C. Oops.

[For some context, see here.]

December brought another visit to local Children’s hospital. And some good news. And sweet relief.

Our last appt, in Jun-05, had the staff urologist preparing us for the worst. Left kidney badly scarred, not working well, reflux on left side not likely to resolve, surgery likely to either remove the bad kidney (thus resolving the reflux: no kidney means no connection to the bladder = no reflux). Gulp. Not life-threatening, by any means, but scary to us.

In the meantime, we were told to continue with the prophylactic dose of antibiotics (daily dose) and to be vigilant about getting urine samples with any unexplained fever (monitor for breakthrough infection). Oh, and when it comes to potty training, we were warned to be very gentle with him - no pressure - because holding urine only makes the reflux worse and increases his chance of another infection. Gulp again.

The doc also said next appt he would want to run a flow rate test to make sure LC was able to completely empty his bladder, so don't bring him back until he's potty trained. Hm, I thought, he'll be almost three by Jun-06, he should be potty trained by then...

Yes, please, go ahead and laugh.

Jun-06 is rapidly approaching. LC is nowhere near potty trained. Because Mommy and Daddy are too scared to try it. We're just not sure if he's ready. And we're scared of traumatizing him and making his reflux/kidney worse. Postpone appt to Sep-06.

Sep-06. After a false start in Jul-06, we are now in full-blown potty training. He's making progress, but not ready for prime-time. Postpone appt again, this time to Dec-06.

Dec-06. Finally ready! LC is doing awesome with the potty training.

The actual appointment
1. Flow rate test
We tried to give LC lots to drink before the epic drive from suburb to downtown. Not enough apparently. LC's bladder isn't full enough to run the test. LC is not impressed with the nurse running the test, and starts full-on screaming when I explain to him that he needs to lie down so the nurse can take a picture of his insides. Not a good start. The nurse tells us to come back after his next test.

2. Renal ultrasound
Another floor, more waiting. Even though it's been a year, I still remember where to go, the rooms, most of the staff are the same too. Eventually, the very nice tech tells us that they don't have enough machines available right now, but if we want, we can go use the emergency room machine. Sure, we say, why not.

This tech is very, very nice. She talks calmly to LC, she tells him what she's going to do. LC is very cooperative, he lies down and is very calm. It's almost like he's in a trance. Now maybe he's just overwhelmed, I don't know. Because he's not screaming, I can watch. She scans the right kidney first. To my layperson eyes, it looks rather, well, kidney-ish. Then she moves to the left side. Takes her a while to find it. Then she does. Oh. Wow. What a differnce. This thing doesn't really look like a kidney, it's very small, darker than the other. So doesn't look like there is good news there.

The ultrasound tech tells us his bladder looks full. Good news for doing the flow rate test.

3. Flow rate test (attempt #2)
Try again. Nope, bladder still not full enough. Damn. Oh well, just have to skip that test this year. We all agree that the next test is more important.

4. VCUG.
This is not a fun test. This is the test where the insert a catheter up his penis through to the bladder, fill his bladder with radioactive fluid, and take a bunch of xrays, wait for his bladder to empty, and take more xrays.

He had this test done to confirm the VUR at 6 months old. That was hard. He screamed so much - because the catheter hurt and because he was being held down. Then he had a similar scan done at 18mos DMSA scan). Similar in that it involved being catheterized. The DMSA scan was the one that showed he had very little kidney function on the left side.

So the 2006 VCUG. Although Mr. Chili was with us, and was probably a wiser choice for the one parent/caregiver that is allowed in a treatment room, you know, him not being pregnant and all, I was adamant that I had to be the one there. I don't know why I felt I had to be there. I think I felt it was a Mom-thing. It had to be me. Plus I think sitting in the waiting room listening to LC cry and scream would be even worse. Mr. Chili, being the awesome guy that he is, stepped back and let me go. Then the tech came out, saw my belly, and said officially I shouldn't go in there, but she understood that I needed/wanted to be there, and said if I was okay with the risk of fetal exposure to radiation, they would double the lead gowns and let me in. (The risk to the fetus is highest in the first tri, I was well into the third tri.)

I carried LC in, sat him on the table. They wrapped one lead apron around my belly, then put a second lead full gown on me. I could barely move. Then we laid LC down on the xray table and I started trying to keep him calm. No dice. I had to hold his arms up over his head so that he didn't a) contaminate the sterile field and b) yank out the catheter. It was pretty brutal. It's hard to gently thread a catheter up there, and especially hard when the patient is tense and screaming. Eventually they got it done. His bladder wouldn't empty completely, not a good thing since there was radioactive dye in there, but it wasn't worth prolonging the trauma.

LC was exhausted afterwards. I carried him out, we got him dressed and I just held him for a long time. When he'd recovered, we headed down to the cafeteria for lunch. We asked LC what he wanted after surviving his last test. The answer was, "Sushi!". Awesome. Gotta love that kid. He ate a bunch of sushi, drank lots and started to recover.

5. Appt with urologist
My mom came to the hospital for this so that she could watch LC while Mr. Chili and I talked to the doctor. You could tell LC wasn't himself because he sat in my mom's lap and watched Treehouse TV like a zombie the entire time we were talking to the doctor.

I was relieved when a resident walked in. This is because I've learned, at least at this hospital, when the head of the dept or staff dr shows up, it's probably bad news. If it's the resident, then it's routine stuff. And it was!

Because LC hasn't had any breakthrough infections since the inital infection, and because his left kidney has just enough function to make it worth keeping (around 15% for those of you playing at home), the treatment plan is to....do nothing!

Well, okay, something. But no surgery. Continue w/antibiotics, continue monitoring for infection. Come back in a year. If still no infections, he'll be four, and after age four, the risk of infections drops dramatically in VUR kids. (I'm not exactly sure why. I assume it's due to just growing - the ureters are longer, so even if there is still reflux, it's less likely to cause an infection.) And LC still has bad reflux on his left side, but not severe. And it's probably not going away. Holy change of speed. Mr. Chili and I had whiplash - this was so different for what we had been prepared for. And such a relief!

The next day, my arms were sore. Deep muscle sore. Like I had worked out. Then I realized it was from being tense, holding LC down and the weight of the lead gown.

There was fallout from the VCUG for LC. Peeing hurt for a couple of days and he totally regressed. He withheld big-time. We did our best to be gentle and patient and he did recover within about a week.


Note: We did prep LC for the procedures, as much as we could. My mom found this awesome book which we read many, many times.

I also asked what to do about the new baby. VUR does run in siblings. And there is no way I am willing to take the chance of having another baby get so sick and be so miserable for months while we figure out it's chronic bladder infection and that the baby has badly damaged one kidney. So the resident recommended that within a month of the baby's arrival, we get ourselves down to the hospital for some tests - minimum of a renal ultrasound. If it's a boy, we'll also need a VCUG. (Boys are more likely to get sicker from VCUG.) I am not eager to subject a baby to these tests. But I cannot go through what we went through with LC again. The doctor said it's very unlikely that this baby will have the same health issues. But he agreed we couldn't take the risk. And since LC was sick within a few months of birth, we need to do this soon after the baby's birth.

I feel good about this. I think it's the right thing to do. Even though it's not gonna be fun.

And I'm still relieved and happy that LC doesn't need surgery!