Altman. Party of 4.: February 2015

On February 5th, Carolyn underwent a redo ureteral reimplantation surgery. This procedure was intended to fix the remaining vesicoureteral reflux, VUR, which has been making her quite sick the past few years.

This is a long post. I subheaded it, so you can skip to what you want to read.

BACKGROUND: Unbeknownst to us, Carolyn was born with VUR, a structural abnormality in which the urine backflows from the bladder into the kidneys because the valves in the bladder do not sufficiently stop the flow of urine back up the ureters. Urine should only flow one-way, out of the body! We did not discover this until she was 4.5 years old and started getting urinary tract infections that persisted and developed into pyelonephritis (kidney infection). These infections come on with absolutely no warning and take her down fast. Her fever spikes to 104+; she goes from healthy and happy to almost unresponsive within a few hours of the infection hitting the kidney. She has missed a lot of school and we are all on edge, waiting for the next infection to surface. When an infection does appear, we have to drop everything and get her to the doctors immediately because the quicker we can get antibiotics to successfully treat the infection, the less likely she will sustain permanent kidney scarring/damage.

To date, I think she has had 14 separate cases of pyelonephritis over the past two years. She has been on more antibiotics than most people get during a lifetime. She has already had two surgeries to fix the VUR, which have been successful in stopping the reflux on left side, but she continues to have reflux on the right side. The surgery has a very high success rate, but I guess she is one of the "lucky" ones to be on the losing end of those rates. Statistically speaking, someone has to be! The repeat infections of the past two years have taken a toll on her entire urinary tract system and have created less-than-optimal conditions that make her case all the more difficult to fix.

We are hoping that the most recent surgery will be her final one and that both kidneys will be protected from the continuing reflux and heightened risk of pyelonephritis. If that is the case, then we can step her off of the daily antibiotics and work on getting her urinary tract back to a more healthful and functional state. Given the minimal amount of scarring that her kidneys have sustained at this point, her long-term health (i.e., renal functioning) should not be jeopardized by this. That is the good news. That is what I have to keep reminding myself. That is also what motivates me to act so quickly when a fever does emerges.

SURGERY DAY: In many ways, this surgery was the same as her previous two surgeries. We had the same surgeon for all three and had become familiar with what to expect at the hospital. There was, of course, major anxiety leading up to it and a bit of relief and excitement when the day finally arrived. This time, however, the surgery was longer and more invasive. We were told that she would be in the hospital for several days (not outpatient, as before) and that she would experience much more pain.

First, you wait in the registration area. Then you go to the exam room to make sure you are healthy.
Next stop is the final waiting room, where she tried to figure out the Wii and other video games.

The biggest difference, perhaps, was that Steve was not able to be with us for the surgery and recovery. Life happened and schedules collided. We originally scheduled the surgery for Feb 12, but the hospital had to reschedule it: our options were for the 5th of February or sometime in early March. Carolyn adamantly chose the 5th because she did not want to wait any longer. We honored her wishes, even though the new date conflicted with a planned trip to Ohio for Steve's dad's memorial service and funeral. So, on February 5th, Steve was on an airplane to Ohio to be with his family, while Carolyn was going into surgery. I simply tried to mask my many emotions surrounding these events. Thankfully, my mom was able to fly out and help me during this time. No matter how old we are, moms can always provide the comfort and support that we need!

The surgery itself took longer than expected, primarily because of the significant scar tissue she has throughout the urinary tract from previous surgeries and the repeat infections. She was supposed to come out of surgery around 5, but we did not see the surgeon until almost 7. The nurse in the OR called to give periodic updates that Carolyn was stable and that all was going as planned, but still that wait, especially those unexpected 2 hours, was long and tedious. I probably aged an entire year for each hour we waited. The surgeon looked weary when we finally saw him (or maybe I was projecting my emotions on him). He was pleased with the surgery. I remain somewhat skeptical and am not entirely confident that it is fixed, just because we have done this before, but I guess I have to trust the surgeon and have faith in his report.

Aah. We see her again!

Carolyn requested a "rolling bed" to go to the OR, but none were available.
While she has no recollection of this journey, her wish came true
when she was transported to her inpatient room in a rolling bed.

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The tooth fairy had to visit the hospital, when yet another tooth came out of her mouth.

(It was pulled by the anesthesiologist before he intubated her.)
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RECOVERY: Despite being stable, she was pretty unresponsive for many hours after coming out of surgery. To make matters worse, she did not tolerate the pain meds. She was a total space-cadet, felt nauseous, and was downright mean. After only one dose of morphine, she refused to press her pump again. She tried one dose of oxycodone (oral), but then refused that as well. Almost immediately, she stepped herself down to regular oral doses of tylenol and ibuprofen. Thankfully, she had a caudal epidural post-surgery to numb most of the pain for the first night.

The left kidney continued to function normally and ran through the bladder as normal. However, to promote healing and prevent any blockage caused by inflammation, the surgeon inserted a stent in the right kidney, which remained in place for a week. This was a long catheter line that went from the top of her right kidney, through the ureter and new tunnel/valve that was created during surgery, out of incision in the bladder, and then snaked through the incision on the outside of her body to a drain bag. Carolyn became a pro at emptying her urine bag, and surprisingly never questioned why it was there or complained when it had to be taken out.

A hospital stay is definitely no vacation, but the staff and volunteers at Primary Children's Hospital do everything they possibly can to make it as bearable as possible. The room service menu allows kids to order anything they want to eat - seriously, anything, anytime! At another time, someone came in with a cart of books to choose from; she chose Black Beauty and will be reading that long after recovery is over. At one point, Carolyn said she would like to do a craft; someone showed up with paper, paint, and paintbrushes within a few minutes. Matt, one of Carolyn's aides, pulled me aside on the morning of day 2 and said he had picked out a prize for her; she just had to set and meet a goal to earn it. The prize was a brand new American Girl doll. Her goal was to get out of bed and walk the hallway to see what was out there. She ended up walking all the way to the craft room. She earned her new doll.

A walk to the craft room to make Valentine's cards and decorations -- and to earn her doll!

A midnight painting diversion.

Some of her meals -- salmon lunch, smoothie breakfast, and a late night snack of popcorn, melon, pretzels, and sherbet.

I am impressed at how quickly and steadily I saw improvement.

Jail break - after 3 days in the hospital.

Now, at 11 days post-surgery, she is off of all pain meds. She still uses caution when moving and avoids major physical activity, but can already get around without too much stooping or pain. She is ready to return to school, though may need to do some half-days initially as she regains her full energy.

And now for the main reason I wanted to post this message.

THANK YOU: Prior to the surgery, I sent out a message asking people to send a card, so she could have lots of mail to open while she recovered at home. My original request must have been forwarded, reaching the in-boxes of people from all across the country and world, many who we have never had the chance to meet. She received hundreds of cards. In addition, there were visitors with meals, packages with crafts and games, and more unexpected surprises every day. What each of you did or sent may have been a small gesture, but when it was combined together, it is more than I can describe.

Carolyn was excited by all of the attention and said that it was better than birthday and Christmas combined. I, on the other hand, am overwhelmed with the generosity and support she and we received. I am so warmed by this incredible outpouring of support and have to believe that this will be the final surgery given the massive amount of prayers, well-wishes, and positive thoughts that accompanied her during the surgery and recovery.

Thank you - though those two words seems like too simple of a response, given the intense feelings of gratitude I feel.

Look behind the couch and all around her to see some of the cards and mementos send to her for recovery.

Catching up on homework when she was able to sit up and concentrate.

Decorating cookies that someone sent. A bunny that could be warmed in the microwave kept her comfortable this day.

Her classmates painted her cards and signed a pair of jammies.

And, finally, some videos of her reactions to all of the well-wishes.

Thank you.

Carolyn elected to do a science fair project this year, as part of the "Excellent Eagle" challenge at her school (an academically enriched project-based learning program). She decided she wanted to learn about the kidneys. Our project is definitely a winner (if only they judged the 1st graders!). We learned a ton, and it was an opportunity for Carolyn to focus her anxiety about the upcoming surgery into understanding why she has been getting so sick and why it is so important to protect her kidneys.

First, we read about what the kidneys did, learning about how much blood is in the body, how much blood the kidneys filter, and how much urine is typically produced on a daily basis.

Then, we made a working model of the urinary tract. The kidneys in our model had coffee filters and would filter out the colored water, leaving a lighter colored water to be flushed out of the body via the bladder.

Finally, we did our experiment. Her research question was "Does what we drink affect how much and what color our pee is?" Steve, Carolyn, and I all drank different types of beverages and then measured our urine output. That was a fascinating experiment. The main finding that we came up with is that it is imperative to drink throughout the day to keep our kidneys working the best.