Posts Tagged ‘pediatric urology’

Annalise’s Kidney Series

October 3, 2012

I’ve had several people mention that they’ve read some (or all) of my blog posts where I documented our journey with Annalise’s kidney. Hey! Thanks for reading! This is one of the reasons I wanted to start this blog – to share how we dealt with Annalise’s birth defect, and how it’s all worked out. I’ve written a 5-part series, from our first glimpse at a prenatal ultrasound, to surgery, to the life afterwards. I’ve created an index to Annalise’s kidney series to aid in navigating my blog posts. You can always find this link on the home page under the “Main Menu.”

As always, please be sure to share our story with anyone who may be facing a similar situation. And don’t hesitate to comment (or email) if you’d like to know more. We are blessed, and I hope to bless others through our story.

Annalise’s Kidney Abnormality: Part V

August 28, 2012

Last time on this topic, we left off after Annalise’s surgery. We were heading home from the hospital, relieved that it was all over. But the appointments with the doctors didn’t stop after surgery…

Annalise had recovered so well in the hospital. At almost 8 months old, she bounced back like they said she would. Besides a slight favoring of her abdomen, I really couldn’t tell a difference. We headed home, on Thanksgiving night. Our home was so much more relaxing than the pediatric unit at UVA Hospital. Don’t get me wrong – the nurses and doctors were great…but nothing beats sitting on your own couch and NOT sleeping on a recliner.

That evening, Annalise started to spike a fever. She went to bed fine, with tylenol, but she was restless throughout the night. Annalise is extremely cold-natured, and rarely ever gets a fever. It was so weird to touch her head and pull back from the heat. We called the doctors at UVA when her fever reached over 101, and they said it was normal to spike a fever post-operation. They weren’t worried, unless she showed other signs or the fever lasted more than 24 hours.

The following day was Friday, and Annalise and I were both cranky from little sleep. But what did I do? I wanted to roast a turkey for the three of us (yes, my 8 month old ate table food…another post to come about all that). Thanksgiving is my favorite holiday, and we were having turkey. Screw my exhaustion. I need turkey. And mashed potatoes. And pumpkin pie. Annalise’s fever started to subside that evening, and was completely gone the next (Saturday) morning. Oh and did I mention? That day was my birthday. Happy birthday, to me…right? I’ve had better days. Probably every other day that year.

So two weeks later we were back at UVA for Annalise’s out-patient surgery to remove the stint. If you remember, there was a slight complication during her kidney removal. Her healthy ureter must have been nicked during the surgery, so they put in a stint to help it heal. The procedure itself lasted 5 minutes – literally just using tweezers to pull out the stint through her bladder. But she still had to go through all the pre-op fasting, prep, IV, and anesthesia. Thankfully, it all went smoothly (aside from the fact that we didn’t know where the out-patient surgery was). And the pediatric urologist did get to look Annalise over. He was pleased with how her incisions were healing…awesome. And we were home in time for a morning nap, and we all Annalise slept wonderfully.

Six weeks from the first surgery in November, we headed to the pediatric urology clinic for our first follow-up. Annalise was now 9 months old, and the surgery seemed like a distant memory. We had stopped giving her daily dose of antibiotics (as a preventative for infection), which was weird for all of us. Since Annalise was just two months old, her  “candy” in a dropper became part of our life. One day, we just stopped (with our doctor’s approval). And life got simpler.

In the clinic, Annalise had to give another pee sample, and have another ultrasound on her abdomen. It wasn’t as easy this time, since Annalise was now crawling and much more agile. But we got through it, and the pediatric urologist confirmed that everything looked great! And great, meaning that all of the dysfunctional part of her kidney was removed. And the kidney and ureter was healing normally. Next appointment scheduled in 6 months.

So as I’m writing this, we had her 6 month post-op checkup a month ago. Same routine: pee sample and ultrasound. But this time, Annalise is a walker/runner/mover/shaker. I felt less like a mom and more like a lion tamer. But armed with a bag of grapes, she held still long enough for a few ultrasound pictures. And everything looked good – the kidney was actually beginning to regenerate and grow. Good signs. And now we’ll head back a year from now.

As Annalise grows, we’ll probably have yearly appointments for follow-up (pending no infections or complications). Basically, she is doing most of her growing right in these few years. So the pediatric urologist wants to watch this kidney as it grows. Eventually, if everything continues to heal and grow as it should, the doctor will stop seeing Annalise. They will assume that after several years of monitoring, her kidney will continue to grow and function normally. So lets just hope for that!

Of course, I plan to update this series if things change course. But as for now, we think that this is the end of the road with the kidney saga. Yes, there will be more follow-ups, more ultrasounds, and hopefully more good reports. Life post-surgery has been uneventful for us, thankfully. And it really wasn’t as bad as I thought it would be (but is anything, in hindsight?). Although, I bet I will still get lost in UVA’s west complex as I navigate the halls to the Pediatric Urology clinic. Let’s hope the new Children’s Hospital opens soon…and there’s a cafe close to the clinic!!!

Annalise’s Kidney Abnormality: Part II

July 24, 2012

So if the title leads you to think you missed something, you probably did! Read/skim Part I to catch up.

Opening Scene: the proud and sleep-deprived Mama brings her 6-week old daughter to the Radiology department at the UVa hospital for precautionary tests.

I haven’t actually met the urologist yet, but I am sitting here waiting for Annalise to have two tests. First, she’ll have a VCUG, which, as explained by the nurse (over the phone), will test for any reflux from the bladder. Apparently this is a common problem associated with kidney abnormalities. So I’ve heard a lot about the VCUG on mommy boards on the internet. I’ll later find out the results are extremely important when it comes to urinary tract infections, which can turn into bladder infections, which then can become kidney infections (each with increasing risks). Reflux is measured on a scale of severity, but any reflux is a problem with which to be dealt. This makes me nervous.

After the VCUG, we’ll have an ultrasound; this time it will not be a prenatal one. The technician will probe Annalise’s tummy and compare her kidneys. They are looking for any more dilation, and a better understanding of her anatomy, which seems to be abnormal.

After these tests, a normal patient would go upstairs (and through the woods, and around the pond) to the middle of nowhere the Urology clinic and go over the results. But since we’re local (and more flexible), we get to come back another day and meet with the urologist. Joy. I just love the whole hospital experience – let’s drag this out do this again!

Still with me? Because right now, I’m still sitting in the waiting room, with the buzzer that the receptionist gave me after checking in. Am I waiting for a table at Outback, or to place my baby on a cold table? It’s easy to forget where you are with the windowless room and the fluorescent lights... Anywho, Annalise is by far the youngest here. But probably noone in the room suspects that she is the one who is the patient. We hadn’t  people-watched waited long, before we are called back.

I wheel the stroller back to a room with equipment that towers over the room. I try to swallow my fears, and follow the nurse/technician’s instructions: take off Annalise’s clothes; put this HUGE gown on her little body; remove her diaper. She’s not too upset – until they take her and try to insert a catheter. It’s the smallest catheter I’d ever seen – and I think it was still too big for her little private parts. She’s in pain, and because she resists, it takes them even longer (and probably makes the pain worse). I am in agony; there is nothing I can do. I try to give her a pacifier (she’d barely even seen one before this day) that was drenched in sugar water (also something new to her). She surprisingly takes to it, but she still sobs between her desperate sucks. I hate standing here, doing nothing, as they strap her down to the table. And I now become associated with her experience of pain, instead of the comforting Mama. The nurses reassure me that the worst is over. Annalise had worn herself out, and she drifts into sleep. They insert some dye into her bladder through the catheter, and they watch it as the machine scans and moves around her. It was pretty incredible to see technology at work. Apparently reflux usually is seen when she pees, so when she did her business, we were done. I would later discuss the results with the urologist, but they say that they didn’t see any signs of reflux.

What a relief. Now unstrap my baby and get me out of here! VCUG – check.

Then I am led to the ultrasound room. It’s nice and dark in there. Calming. Compared to the VCUG, this seems like a walk in the park. Annalise is grumpy from being woken up too soon (who wouldn’t be after getting something shoved up your pee-hole?), but the technician gets the images of the kidneys and bladder. The back door opens (There’s a back door?) and a radiologist introduces himself. Apparently, this is a rare occurrence, but he actually came in to take a second look and get more images. He takes the wand, and after scanning around, confirms the earlier prognosis of a duplicated renal system. He tries to look as deep as possible, but he can’t find where the extra ureter goes. Apparently, a duplicate ureter usually does not drain properly into the bladder (which is what causes the kidney to become dilated) and many times is ectopic. The upper portion of the right kidney still shows dilation, and I’d further talk about the next step with the urologist.

Bummer. More dilation. Probably more tests.

My husband joins us as we come back a few weeks later to the Urology Clinic. After they taped a too-large bag to my daughter collected a urine sample, we meet our urologist. He surprises me – warm, friendly, empathetic, a good listener. Are you sure you are a specialist? He then basically confirms everything that we’d heard from the technicians and doctors before. But he does give us direction – more tests. We’d come back in a few weeks for a kidney scan (which tests the function of the kidneys) and another ultrasound. Then he mentions the dreaded word: surgery. I can’t believe he just threw it out there – the word just hangs in the air. Put on the brakes…we just met you! He probably sees the look in my eyes, because he immediately jumps to reassure us. If Annalise had surgery, it would be a ways down the road, and it’s a non-invasive, laparoscopic surgery, with very short recovery time. Oh, and then he mentions that Annalise should be on a daily antibiotic. Why? The VCUG showed no signs of reflux? Just preventative, precautionary…ha! that’s what we have heard all along! So we pick up the prescription on the way home, and Annalise begins her love affair with medicine that very night.

Next stop: more tests at UVA.