Posts Tagged ‘kidney surgery’

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 IV

August 11, 2012

So we’re picking up in this multi-part series after we heard the news that Annalise will need corrective surgery on her right kidney. (See Parts I, II, and III to catch up.)

It’s early November. Annalise is 7 months old. It has been several months since we’ve visited UVA to run tests or see a specialist. Life has almost returned to normal…almost. The prospect of her impending surgery has loomed over me. At this point, many of our friends and family have heard about this saga with Annalise’s kidney. Many are praying for her miraculous healing. While Jason and I did believe that God could miraculously heal Annalise and that none of this surgery would be needed, we couldn’t help but ask: would He?

We head into the pediatric urology clinic for one last ultrasound and pre-op visit. Annalise sits on the examination table and watches the radiologist and rookie resident wave that wand over her belly. And yup, the right kidney is still dilated – the upper portion. Everything else looks normal. God has chosen not to heal Annalise miraculously. I have prepared myself for this: surgery.

As we sit in our examination room and wait, reality sets in. We are going to do this. The thing we feared most is becoming a reality, not just a possibility! The doctor, the pediatric urologist, comes in quietly and sensitively. “Hey guys…how are you doing?” I just love how he is so empathetic and understanding – even with his first few words! We chat a bit, and then get right to talking about the surgery.

The surgery will last about 4-5 hours. The doctor, himself, will perform the surgery, with the assistance of the laparoscopic devices. There will be three holes in her abdomen – the largest over her belly button where the camera will be inserted. Annalise will go completely under, even before the IV (thank you Jesus!). They will remove the upper portion of her kidney that is non-functioning. Then they will close the kidney with dissolving stitches, and will glue her three exterior incisions (instead of using sutures). A team of doctors and nurses will be attending Annalise at all times. The surgery will be in the main hospital, and we will be able to see her almost immediately after she gets out of the operating room. The doctor says that they like for the kids to wake up with a familiar face. Annalise will stay in the recovery room until she wakes up, and then she will move to the pediatric unit until she is discharged. He says that we should expect her to be tired and groggy, but that she should bounce back really quickly. Annalise should stay 1-2 nights in the hospital, and one of us should plan on staying with her (uh, glad we’re on the same page because I’m not leaving her at the hospital alone after all this drama). He gives us a full packet to prepare us for the big day. It looks like an orientation packet for college or a new job. What all could possibly be in here? Free post-its? Coupons for pizza?

We pack up and head home. Three weeks until D-day. The surgery is scheduled for the week of Thanksgiving, and also my birthday week. Ugh. The silver lining is that Jason will already have a few days off work, so he’ll only need to take a few more for the surgery. We try to spend the next few weeks not thinking about the surgery, but it’s hard to think about “what if’s.”

The night before, I squeeze Annalise a little tighter before bed. I kiss her and try not to think that this could be the last time I hold her like this. Why does my mind go to worse-case scenario? She’ll be fine! This is routine! But I can’t help it. As I leave her room and Annalise innocently falls asleep, I cry. This could be her last night in our house. I say a prayer, mostly for myself, and try to remember that Annalise is God’s child. I am entrusted to care for her, as long as she (or I) is alive. If God takes her from me tomorrow, I have to remember to be thankful for these last 8 months with her. I can do this. Worse-case scenario, I can still do this. So help me, God. And God…be with the surgeon and the anesthesiologist! If anyone needs to be well-rested for tomorrow, it’s them!!!

We get up bright and early on a cold November morning and drive the familiar drive to UVA hospital. I haven’t slept a wink, even with the help of my best friend, Tylenol PM. We head not toward the urology clinic, but towards the main surgery department. It’s already full – with middle-aged people and a few teenagers. Not many kids.

Annalise is fasting, yet again. As we wait, she does manage a quick 45 minute nap in my arms – despite the fluorescent lighting and the intermittent hollers by the receptionist. We get registered (somehow this takes two different people?) and wait some more. It’s lunch time. I go get some food. We realize that Annalise somehow got bumped to be the third patient in her operating room. Probably because of some jerk-face, arrogant busy surgeon who bumped us to the end of the day. Gotta love hospital politics. By the time we head upstairs to pre-op, it’s 1pm. Annalise hasn’t eaten in over 12 hours, and she’s only had 45 minutes of nap for the day. She’s almost 8 months old…do you hospital people realize what unnecessary hell you are putting us through by having to wait this whole day? And the surgery hasn’t even happened yet!?!? I try to stay calm, because I realize that the people who I am talking to aren’t responsible for the scheduling of the OR or the way things are run. But God help the head of scheduling, or the surgeon who bumped us, should I run into them at this moment. Justice will be done, by my hand and/or mouth.

But thankfully (for them) that doesn’t happen. Annalise gets dressed in her too-big hospital gown and her hospital bracelets on her ankle. We say goodbye as a nurse takes her away to the OR. Normally, I think I’d melt down – at least cry. But at this point, I’m relieved that the waiting is over. Soon she will be knocked out with the anesthesia and be able to rest.

Hours go by. I’m not sure exactly what we did to pass the time. I know I was breast-feeding Annalise at that time, so several times I had to slip away in some random empty office (why don’t hospitals have a designated place for pumping/nursing?) to pump. It was nice that UVA had an update on the electronic schedule that we could follow on a TV in the waiting room. We could see when she went from pre-op to operating to recovery. It provided a lot of peace, in us and in the waiting room.

About 5 hours later, our doctor comes into the waiting room to see us. I am surprised – because I thought they would call us to see him. For a split second, I think he must have come down to bring bad news. But his smile alleviates my fears. He says that Annalise did well; the upper portion was removed; she was being moved to the recovery area; they did have to put a stint in the healthy ureter (they probably nicked it along the way), but nothing to be worried about; we could go up and see her. Really? I realize I had been bracing myself for the worst, but this seemed to be good news…right?

And so another person comes and escorts us the back way into the recovery room. And there I see my baby: another nurse is already holding her, giving her a bottle of Pedialyte. Annalise is awake, if you could call it that. Her eyes are barely open, and she is barely moving her body. It is shocking. I had never ever seen my wild child so lethargic. She is also swollen from all the fluids they had pumped in her. As soon as I walk in, the nurse hands her to me. Annalise feels like a dead-weight, but she is alive and well. Still hooked up to the IV pole and catheter bag, I can’t go far. But it feels so good to hold her in my arms. Never before had I felt more like a Mama Bear – not even when she was first born and they laid her on my bare chest. Annalise (and I) had been through such a traumatizing day, an unnatural one, at that. And now, I can be there for her.

The first moments we saw her after surgery

As I hold her, they wheel us into the pediatric unit. At this point, it is around 9pm. My parents come to see Annalise, and say goodbye. Jason helps us get comfortable in our new room, and then heads home to get a good night’s sleep. All three of us are exhausted. After finally getting to nurse, Annalise falls back into a deep sleep. I try to get comfortable on the hospital recliner, which automatically pops upright at the slightest move. Throughout the night, Annalise sleeps soundly. Several times, a nurse comes in to check her vitals, administer any medications, and empty her catheter bag. I know that Annalise is feeling better when at 6am, she wakes up, ready to eat! That’s the girl I know – too busy to sleep in!

Besides spiking a bit of a mild temperature and being a bit less active, Annalise went back to herself. She napped, ate, and played as normal as expected in a hospital room. It surprised me that she was so active after having surgery the day before! I could tell she was being careful of moving her abdomen or putting any pressure on it. By the afternoon, the doctors and nurses felt like she was well enough to go home, if we wanted. I was anxious to leave and return to the comforts of home. So, we got our discharge orders, and left the hospital with our baby – about 24 hours after she got out of surgery! The nurses were all sad to see her go, several of whom said they fought over holding her in the recovery room post-op.

At home, Annalise recovered well. She did spike a fever the following day, which the doctors said was normal. With only tylenol, Annalise was literally back to normal within 3 days after surgery. It was amazing, as good as the doctor had promised.

But there was a slight complication that needed to be dealt with – that stint in her healthy ureter needed to be removed in 2-3 weeks. And then we’d have the post-op check-ups to monitor her recovery. The biggest concern was that another surgery may be needed if they missed something. The first look at her kidneys would be 6 weeks post-surgery, which would be the beginning of the year.

The worst was behind us – the worst, meaning the hell-hole of the OR scheduling at UVA and the hours of waiting with a fasting and exhausted 8 month old. Now to deal with life after D-day.