On this day, May 27th, of last year I was sitting in the surgery waiting room at The Children's Hospital while Sara was having her urostomy surgery. This is the story of that day (as I remember it). And this is a long post, so consider yourself warned!
This story really starts a few days before. Sara had been in the hospital for 2 weeks, and the infection was barely being managed because the bug was resistant to almost everything we tried. When her urologist told me that he thought it was time to take drastic measures, and then started talking about this surgery, I just started crying. It was terrifying to think of sending my baby under the knife for something as life changing as this. I knew it was the right choice, but it was a very difficult one.
Sara was released from the hospital on Friday for Memorial Day weekend, and I was told to bring her back on Tuesday. Sara wasn't allowed to eat starting Sunday, and it was difficult to eat knowing she couldn't. My aunt flew in from Ohio to help support Sara and I through this ordeal. She came to be at the hospital with us 24 hours a day, run out for food, sit with Sara while I showered or if I just needed a break. She was amazing, and I know that it was hard for her to watch Sara go through this event.
I was so stressed about admitting Sara to the hospital on the next day, that Monday night I started getting sick. I ended up getting so sick and so dehydrated that I ended up in the ER until 4am. My vomiting was so bad the doctors were worried I was having an appendicitis, and when they told me that I might have to have surgery I told them that wasn't about to happen because Sara was being admitted the next day. Good thing that wasn't the case, but the doctor was not happy with me when I told him I wasn't having surgery even if it was.
After getting home from the ER, I caught about 3 hours of sleep before I had to get up and get ready to take Sara to be checked in. I still wasn't feeling good at all, and my mom tried to convince me to stay home and meet them later, but I didn't see that as an option.
After getting Sara in her room on the 6th floor (surgical recovery), we then took her to the procedure room and put in an IV and a feeding tube in her nose. The reason we had to be there the day before was for a bowel prep in case her doctor needed part of her bowel for the construction of her stoma, so we used the feeding tube to put cleansing medicine into her because she had to drink a lot of it and we knew she wouldn't. Watching them jam that tube up her nose was WAY worse than any IV they ever put in, and it made everyone in the room (myself, my mom, and my aunt) cry. It was awful, and I hope I never have to do that to her again.
Once all that was done, we just waited out the rest of the afternoon while the medicine did its job. I didn't sleep well that night, as you can imagine. And when I woke up the next morning after a couple hours of sleep, I realized I had an infected wisdom tooth. I'm so glad that my family knows lots of medical people cause my dad was able to bring me antibiotics to treat it without me having to leave the hospital. Once my dad, mom, best friend, aunt, and sister were there, we took Sara down to the 2nd floor where she would actually be having her surgery. They put her in the largest pre-surgical suite they had; they knew Sara was what they called a Frequent Flier, and there would be a lot of people who wanted to see her before a surgery this important. And that room was packed; if I remember right the room had Sara in her hospital bed, me, my mom, my dad, my aunt, two of my good friends, my sister, Curtis, and the three doctors. And after signing the form, they took her down the hall and I knew we were in for a 4 hour wait.
And waiting was the worst part. I spent the whole time trying not to throw up. All of our family and friends took up about 1/4 of the waiting room, and we added to our ranks once there. Everyone was amazing at trying there best to keep me distracted. They brought cards, books, board games, and loads of other things to pass the time. The nurse called out from the surgery room every hour to my cell phone to give us an update. I didn't eat or drink the whole time, and refused to leave the waiting room even though many of my companions tried to get me to go up to Sara's room and take a nap.
And of course, making myself sick with so much stress was not needed. Sara came out of surgery with flying colors. She did super well and they didn't have to take any of her bowel for the reconstruction, which meant her recovery would be that much faster. She was still very groggy and barely awake when we took her back up to the 6th floor, but only 2 people could be in the post op area, and neither Curtis nor I was willing to give up our time there for anyone else to come in. Once we got her up to the 6th floor, everyone was able to come in and see her. She slept most of the rest of the day, and most of the night. She was pretty sedated with pain medication, so there wasn't much going on.
Sara spent 3 additional days in the hospital recovering. This was much shorter than her doctors expected (they were thinking more like 5 days), and she was discharged the following Saturday. I had to watch a video about how to care for her new urostomy and stoma before they would let us leave, and I remember thinking that I couldn't do this. How was I ever going to be able to change this bag and care for this new "thing" on my daughter's abdomen? And what was Sara going to say to me when she was old enough to understand what I had done to her and that it was permanent?
I remember that day like it was yesterday, and I don't think I'll ever forget it. It was one of the most stressful days of my life!! I'm grateful that we did it, and had I known she would have been this healthy I would have agreed to it sooner. But like her doctor told me afterward, if he'd had a crystal ball he would have done it sooner too, but it was a drastic step and we weren't sure it was going to work. He then told me that he'd never done that procedure on any child less than 6 years old (Sara was 2 at the time), which was another reason he hadn't wanted to do it so soon! I'm glad he waited until the surgery was over and she was all healed up before letting that one out of the bag.
Since Sara's surgery she has done amazing! She's had no infections until last week, which is much better than being hospitalized every month. She learned to stand and walk with her walker; she's received her wheelchair and learned to get around in it on her own. Sara understands that her stoma is where she's pees from, and sometimes calls it her pee-pee instead of her stoma. She an tell you how to change her bag, although she can't do it by herself yet. She knows she has to be careful not to rip the bag, and she helps me to drain it when it needs it. It took a couple of weeks to get used to caring for her new stoma, but now it is a normal part of our routine. I don't stress out when it leaks, or freak out when I don't cut the circle on the bag exactly right.
We've both come a long way from this day last year! We've grown and learned things I never thought we could. We've done amazing things, taken amazing trips, and experienced life to it's fullest. Some of those things we never would have been able to do because Sara would have been too sick. This surgery gave her a new lease on life, and we both plan to take advantage of that and see all that life can show us!