Good evening! I just wanted to give an update on Scarlett's surgery and recovery. Bear with me, this is kind of long with a lot of details (of course)!
First of all, thank you for all the prayers, support and checking-in on us these past few days. It's been a whirlwind 2 days but we are finally settling down. We are home and very glad to be here!
Ok, so we got to Medical City Children's Hospital at 6:00 a.m. Monday. We did the routine answering of 500 questions - the same 500 questions we answered 3 weeks ago - got Scarlett changed, gave her the "googly juice" (liquid Versed) and headed upstairs to the surgical holding area. By 7:20 Scarlett was getting very dazed and relaxed and Dr. Strand stopped by to discuss the procedure and answer anymore questions. He told us to expect surgery to take about 2 1/2 hours and that he would take a look at her left ureter as well just to make double certain that everything on that side was A-OK. He said that if he found a problem with the left side he would come get us to talk before going forward. He marked a big purple line on Swilly's abdomen and drew a smiley face on her right hip. She was so looped out that she didn't budge at all. We have many days where we wish Scarlett would just chill, relax and snuggle in our arms, but seeing her looped out on drugs was horrible. I wanted to be wrangling my wild child, not starring into her glassed over eyes, rubbing my hands through her hair and wiping tears off my face. She was in good company with her lovey, her favorite blanket (Thank you Monica) and her Snoopy Dog. Chad gave her Snoopy Dog last year on Valentine's Day and he goes everywhere!
At exactly 8:00 a.m. the OR nurse handed Scarlett to Dr. Anderson, the Anesthesiologist, and we watched them carry her through the double doors and waited for them to close before we headed out the other way. Chad's mom and my mom were waiting for us in the waiting room. I headed for the bathroom to compose myself.
We like Medical City Children's Hospital for 1 reason - they have a "Status Board" in the waiting room so you know at all times what is going on in the operating room. Here's how it works: while we were in "Holding" waiting for Scarlett to go back, our family could see the time that she went in there. Then when she enters the "OR" the time is updated. To the right of her initials on the board are symbols to let us know what is happening while in the OR. The first symbol is a Scalpel, letting us know they have started. The next one to pop up is Stitches, letting us know they have begun to close up. The final symbol is a Band-Aid, letting us know that they have begun to finish!
We headed downstairs to eat some breakfast about 8:20. The time of 8:07 was under the OR column but there wasn't a scalpel yet. I got my breakfast and scarfed it down. Then I noticed that there is a status board in the cafeteria - jackpot!!! I walked over and there was a scalpel next to her name. The time was 8:43. At 8:51 my phone rang and it was the OR nurse. She said that Scarlett never cried on the way to the OR and she went to sleep with no problems. Surgery had begun. Up in the waiting room Amber was waiting for us and Ashley showed up a few minutes later. The waiting room began to fill up with families. At 10:30 the board showed the "Stitches" symbol! I got super excited and headed to the bathroom because I knew they would be out to get us shortly. Then we waited. About 11:00 the "Band-Aid" symbol appeared. I had to go to the bathroom again because I knew they would be out soon to get us. Finally, by about 11:35 they came to get us. When we got into the recovery room it was so quiet. There was only 1 other baby in there with Scarlett and they were both snoozing. The nurse let us know that everything went well but Dr. Strand would be by shortly to discuss everything in detail. While we waited she let us know that Scarlett had woken up with "room air" not oxygen and she was the 1st patient all day to accomplish this Gold Star! She had just been given a dose of some medicine to help with the pain so we were letting her sleep a little so she could begin sleeping off the anesthesia. I noticed a needle poke and dried blood on her hand but no IV. Her IV was in her right foot. We still do not know if she pulled the IV out of her hand and it had to be moved or if something else happened. The Dr didn't even know. Since we know our Swilly so well, we assume that she had something to do with her IV starting in one location and ending in another.
The doctor came by and said that everything went well on the right side and the left side looked great. BUT, he didn't expect to see what he saw. Ok, so here's the visual: The kidney is at the top, the ureter tube comes out of the bottom and inserts in the top of the bladder. To begin with, the ureter grew crooked or something and didn't grow into the bladder in a straight line - or something like this. So we knew the ureter was dilated and that she had the reflux. But what we all didn't know was actually HOW dilated the ureter was. He said it was the size of one of those long skinny balloons that people use to blow up and make animal shapes out of - deflated, of course. That's pretty big in such a little body. Here's the kicker - the end of the ureter that goes into the bladder was super duper extremely small; so small that he couldn't get an itty-bitty catheter through it. This means that urine would flow out of the kidney, into the large ballooned out ureter and sit there, harvesting bacteria while it slowing drained into the bladder. As more urine tried to fill the tube more would back-flow into the kidney - bacteria and all. By the way, the ureter should roughly be the size of a pencil lead. The doctor cut off the bottom of the ureter that was small and when he did this the ureter immediately began shrinking. This is a wonderful sign. He attached the ureter to another spot on the bladder. Since the ureter began shrinking on it's own he didn't have to put a catheter in it overnight; she only had the catheter in her bladder overnight.
By about 1:00 we were settled in our room. Scarlett woke up and one point, rolled over and tried to stand up. She cleaned out Papa Tom's pocket of crackers, looked at her audience and laid back down. The nurses were great at making sure they stayed on top of her pain. Since she can't say that she's hurting they just kept her meds going every 4 hours around the clock. At home we can alternate with Motrin. After her 4:00 dose of meds I noticed that her blanket underneath her feet was wet. Remember, her IV is in her right foot. I called the nurse in so she could look and I was praying that it wasn't out and have to be put back in. The nurse was able to get the IV situated back in the vein, get her foot taped back on the board and flush the line. Everything looked great until blood and water began leaking from the top of the IV catheter coming out of her foot! The nurse tightened it really well, taped some more and we all just waited to see if everything would hold. It did...for a while!
By about 6:00 p.m. she was wide awake and we were all a little restless. I found a wagon down the hall, loaded it up with pillows, ordered Scarlett some room service, and we all went on a walk around the floor and downstairs. We got back right about shift change and fed her some mashed potatoes and she played in bed while we ate. I got ready to change her diaper and noticed a big blood ring on the blanket underneath her right foot. The bed was soaked and the IV was HANGING OUT OF HER FOOT! This is when we met our night nurse. She took the IV out and called the doctor because Scarlett still needed 1 more dose of antibiotics. Luckily, the doctor said that we could just begin them at home. I am so glad that another IV wasn't needed.
At 8:00 p.m. she was due for meds and then we were settling in for the night. We had no idea how everything would go so we wanted to get settled as early as possible. I crawled in the crib with Scarlett and Chad was on the "couch" thingy. All 3 of us were miserable all night!!!!! Not only did the nurses have to come in every 4 hours for meds and vitals but we had to call them in EVERY TIME THE STUPID MACHINE WOULD BEEP!!!!! In case you haven't heard, Scarlett doesn't like to be messed with or have anything attached to her messing with her. This means the oxygen saturation sensor on her toe and the cardiac leads on her torso were constantly being ripped off. We were able to manually silence the machine for 3 minutes at a time but since she was on pain medication she had to be monitored.
First thing this morning Scarlett's catheter came out. We went for another ride in the wagon while we waited on her breakfast. After breakfast she was ready to go. She felt wonderful!!! She ran around the halls until we were discharged at 11:30.
She took a long nap when we got home and had lots of cuddle time afterwards. The doctor will look at her kidney with a sonogram in 1 month and then possibly repeat the VCUG x-ray to make sure the ureter has gone down and to make sure the refluxing is fixed. We are so glad that the surgery is over and Scarlett is on the mend! Thank you all again for the prayers and support. Now it's time for all of us to get some much needed sleep!!!!
