Monday, December 26, 2016

Emma's Surgery #2

Emma had surgery earlier in April to remove her extra ureter and reconstruct her right kidney.  Her urologist hoped that after that surgery, Emma's reflux would eventually diminish on its own as she grew older.  Emma had four infection-free months, but then developed infections again in August and September.  Both were severe kidney infections with high fevers, so we knew that she was going to require more surgery.

We took her to the hospital for a VCUG; a test where they ran dye through her urinary system to watch how everything flowed, and found that her reflux had worsened.  So we scheduled a second surgery on December 6th to have her ureters re-implanted into the bladder wall, which we hope will eliminate her urinary reflux for the rest of her life. Her surgeon wanted to perform the surgery laparoscopically and thought that it would take less than 4 hours.  However, she found so much scar tissue surrounding Emma's bladder and ureters, she had to cut open Emma's bladder and perform the surgery from inside the bladder wall. It took 5.5 hours, and although Dan and I didn't handle the extra time well, Emma did fine throughout her surgery.

Emma doesn't have a normal bladder - it is larger than it should be and she has to work harder to fully empty it. However, her doctor said that there is still an 80% chance that this ureter re-implantation surgery will be successful in eliminating her reflux permanently.  There are several situations that could cause the surgery to eventually fail, and some of them are determined by Emma's bathroom habits.  Specifically, if she holds her bladder longer than she should and allows it to fill to capacity, the pressure could push the ureters back out of place so that reflux can occur again.  From what we understand, if the ureters are pushed out of place even once, they won't go back on their own and Emma will require surgery again to re-implant them. So we are keeping her on a regimented diet and potty schedule. We are praying that nothing will cause the surgery to fail and that Emma will never have reflux or infections again after all she's been through this year!

We expected Emma's recovery to be similar to her last surgery recovery in April. It was about twice as tough on her and the rest of us, though.  Maybe it was because it was her second surgery in a year, or because she is older now, fully potty trained, and more upset about all the aspects of recovering from bladder surgery.  Regardless, we spent more days and nights in the hospital, and had a harder time getting Emma to comply with her at-home requirements. She had no appetite for two weeks, so she lost several pounds, which made her weaker (and whinier). It's three weeks later and she still isn't feeling like herself yet, although we've had much better days recently.  We are very grateful for everyone who has prayed for Emma and us! God kept her safe through her surgery, and he has sustained us through many tough days and nights.

Children's Hospital of the King's Daughters (CHKD) has been a fantastic hospital through all of this.  We are grateful to have access to excellent doctors and a top-notch healthcare facility in Hampton Roads. We met many parents who drove hours to bring their children here.  They receive toy donations from several stores, so Emma usually receives a new stuffed animal when she checks in for surgery.

They also have a great toy room for the kids to play in while they wait for surgery.  It really helps to take Emma's mind off the fact that she can't eat or drink for hours beforehand.

They have several cars, bikes, and wagons, and will let the kids choose one to ride in back to the surgery room.  Emma always opts to go back kicking and screaming at the top of her lungs, though.

Our parents are such blessings to us, and have spent many hours in the hospital waiting room with us this year.  

Sleeping peacefully right after surgery.  It took quite a while for her to fully awaken, which turned out to be a blessing since no one had a moment's peace once she woke up. Ha!

I found the perfect balloons for Emma to wake up to! My Little Pony and Paw Patrol!  She doesn't pay much attention to balloons, normally, but they are her favorite thing to see when she's waking up from heavy drugs.

We also bought her some Paw Patrol toys to play with, but she just couldn't stay awake her first day in the hospital. I was so glad that she got some rest, because all the rooms at CHKD are shared, and we had the saddest infant next to us who cried for hours non-stop that night. Emma was still able to rest through most of the noise, though.

On her second day at the hospital, Emma's doctor insisted that she get out of bed and walk. Dan took her to the toy room and made the poor girl hobble a few steps like a 100-year old woman before he would take her back to her bed. 

It's this poor woman's full-time job to help the sick kids have fun at the hospital. Emma is making sure she earns her salary.

Emma was in the hospital for 4 nights. Almost every night at 2 a.m., the nurses decided she needed to be stuck with needles, and of course she couldn't sleep for hours after that kind of trauma. So our laptop and DVDs came in handy between 2-5 a.m.  We tried to keep the volume low for the sake of our room neighbors.

Emma had lots of visitors. Her Grandma and Grandpa came every afternoon, her teachers from school visited one day, and Hallie came to see how her sister was doing. I was a little too nervous about germs to allow Hallie to spend to much time at the hospital.

Emma became more and more anxious each day we were at the hospital.  Every time the nurses and doctors walked through the door, she would have a meltdown until they had left, even if they didn't touch her.  She had been through too many scary, painful things at the hospital, and although she still wasn't doing great by that Saturday, we were so ready to be back home.

Emma was blessed with lots of new toys and books while she was in the hospital! The teachers and students at Dan's school and our families showered her with presents every day. They also formed a meal train for our family and delivered dinners to us for two weeks! We are so grateful for everyone's generosity to Emma and us.

We were hoping that Emma would improve more quickly once she was home, but we had a setback pretty early on. Emma came home with a suprapubic catheter, which exited her bladder near the top and came out through an opening in her skin just below her belly button.  After she was home for a day, she began to experience severe bladder spasms that made her feel like she should go to the potty every 15 minutes.  Her bladder was working so hard that her catheter wasn't even having to drain, which defeated its purpose. We called her doctor, and she had us come back to the hospital to remove the suprapubic catheter and insert a normal Foley catheter into Emma's urethra. This was something that we dreaded, since it meant having "Catheterized Emma" for two weeks. She is not a happy person when she has a catheter in. It's entirely understandable, but difficult to deal with.

Catheter exchange day. It was exhausting for everyone.

We developed a simple routine at home, but Emma fought us about taking 3 baths a day and cried and whined through them. The catheter terrified her.  She would probably have been more comfortable with a snake in her tub. We set her up in a toddler tub in the living room (mainly to avoid having to carry her up and down the stairs several times a day), and turned on the TV, gave her toys, and did whatever we could to distract her during her baths.  But in the end, we just had to give her a lot of tough love, since the catheter and baths were necessary.

Diaper changes were another big deal. Emma wore two diapers while the catheter was in.  We tried not to change her any more than absolutely necessary because again, she was terrified when we had to move the catheter.  Here, we had Emma and Hallie lined up for synchronized poopy diaper changes. I know you're jealous of our glamorous lives.

We would never have been able to survive through this recovery time without the unflagging support of our parents. My parents became Hallie's surrogate parents while Dan and I tag-teamed nursing Emma and working our jobs as many hours as we could squeeze in. Dan's parents came to help us at the hospital and to keep our (slow) momentum going on our kitchen renovation. They are amazing.

So many sweet friends from Dan's school came and delivered meals to our family. Emma's best friend from school, Elisha, came with his mom to deliver a dinner, and stayed to play for a few minutes. Emma was so excited to see him and show him all her toys!

We knew that Emma wouldn't get over the hump and truly feel better until her catheter was out.  That event happened 5 days earlier than scheduled on Sunday at 2 a.m., when Emma called me because her diaper was wet. I helped her go to the potty, then changed her diaper on the floor. I was holding her catheter to the side so I could wipe her, and Emma had a panic attack because she felt me move the catheter. Before I knew it, she had given me a swift kick to the chin! I was so mad, I could've spit, but then I realized that I was holding her catheter in my hand! Yikes! When I jerked back, I had yanked the thing right out!

After I checked to make sure Emma wasn't bleeding or in pain, I ran into our room to wake Dan up and tell him to "look at what his daughter had done." The Foley catheter has a small balloon that rests inside the bladder and is supposed to keep it "locked" inside. Emma and I had managed to pull the inflated balloon right through her urethra. If that doesn't make you squirm in your chair, I don't know what will.  Yet Emma felt fine and she was SO happy to have no catheter!  We considered going to the emergency room, but in the meantime, I ran a bath for Emma and left Dan to search online to see how serious this was.  Apparently, it's not that big of a deal, and the doctor would just insert another catheter.  So we made Emma soak in her tub, drink tons of water, and pee twice before we felt that she was healthy enough to go to bed and not die in her sleep.  By then, it was almost 4 a.m., and we were all exhausted. We called the pediatric urologist who was on-call and he confirmed that we shouldn't worry, and we didn't need to have a new catheter put in. Hallelujah! I will probably never say this again in my lifetime, but that was the best kick in the face I've ever had.

Since then, Emma has improved each day and is almost back to her old self.  She is still thin and tires easily, but her appetite is back to normal, so her stamina should improve every day. We pray each day that God will heal her and allow that surgery to be the last one she ever needs.

This was the same morning after her catheter came out. She suddenly was interested in going outside for a walk, and her smile returned, which was the best thing we'd seen all week. We sure do love this crazy kid!

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