On may 7th, Carolyn had surgery. She had ureteral reimplantation on the left side of her urinary tract, and a cystoscope on the right side. Both procedures were intended to fix the reflux of urine back into her kidneys, which have been causing kidney infections since December. The reimplantation procedure surgically created a new tunnel/valve connecting the bladder and kidney, using the existing ureter and the muscle wall of the bladder. The other procedure was done laproscopicaly, where they injected a bulking agent into the ureter/bladder to create a more effective valve on that side. Urine, with all of its naturally occurring bacteria, should only flow one direction, out of the body. We hope this surgery has fixed the anatomical issues that were causing the reflux of urine back into the kidneys (which are congenital), and that we are at the end of watching and wating for the next kidney infection.
Before surgery, Carolyn was quite nervous. She asked a lot of question -- like whether the surgeon would use a knife like the sharp ones we have in the kitchen drawer to cut open her belly, and how the doctor would make her fall so soundly asleep, because she almost always wakes up when we come home and kiss her good night. Her questions were thoughtful and mature, and ultimately she understood why we needed to do the surgery, how it would (hopefully) stop the infections she has been having. But that did not mean that her anxiety and nervousness were not also apparent. There were some pretty spectacular meltdowns leading up to the surgery. She barely slept the few nights before surgery. She nervously played with the toys in the registration area. But gluing herself to the TV the night before, the morning of, and even in the pre-op waiting room seemed to keep her mind most occupied ....
All of the staff at Primary Children's Hospital were awesome. They made Carolyn feel very comfortable. They explained everything to her.
She particularly liked Dr Bowden, her anesthologist. When it came time for surgery, we walked with Dr Bowden down the hall to the doors of the OR. Carolyn gave both Steve and I a hug, then grabbed Dr Bowden's hand and walked bravely into the OR. I thought that part was going to be much, much harder. I thought she would be scared and clingy and crying ... instead, I was shocked, proud, in awe of her farewell. I just watched her, and commented to Steve what an awesome, mature little girl she is.
Then, the wait. The surgical procedure was fairly long, about 2.5 hours. Like the goodbye, I prepared myself for a far worse wait. I admit, I was nervous and on-edge and glanced at the clock every minute, but the time passed fairly quickly and was not nearly as bad as I imagined it would be. There was such a feeling of relief when we saw our surgeon walk into the waiting room. He was pleased with the surgery and said she did well.
About 15 minutes later, we were called back to the post-op area, when she was awake and breathing on her own. Ah, what a relief to see this beautiful little girl.
Later I asked her what she thought when she woke up and saw the anesthesiologist again, and she said "I just felt stupid. I did not know how to talk." The following day, less than 24 hours after surgery, she weaned herself off of the pain pills (oxycodone) completely because she said they made her head feel like it was "rotting" ... so while her body tolerated the anesthestia and narcotic level pain meds, they did not make her feel that great. She decided the pain in her belly was not nearly as bad as the way her head felt when she was on them. Tough little girl. I am pretty sure I would be much more of a baby if I had my belly and bladder sliced into.
Believe it or not, we brought Carolyn home about 90 minutes after we were allowed to see her in the post-op room. I was so hesitant to do this as outpatient surgery, even though the docs assured us how much better it was for kids to recover at home. I felt a little bit better about taking her home when almost immediately after waking up, she asked if she could go to sleep in her own bed. Her vitals here stable, she was keeping fluids down and only had a little nausea, so the nurse took out the IV, filled her pain med presciption, and we got ready to go home. A nurse put her in a wagon and pulled her out to the front of the hospital. The valets pulled our car right up to the door. She slowly hobbled into the car and smiled as we pulled away from the hospital. She was ready to go home, and was so relieved to take her position on the couch.
She walks slowly, stands with a stoop, and absolutely cringes (or cries) when she has to sneeze or wants to laugh. She had a major fit when we had to remove the bandage over her incision -- I think she was scared about what she would see when it was off. Other than that, she has been a pretty easy patient, watching movies and sweetly resting on the couch. She will get up and sit at the table to do crafts and activities every once in a while, and is becoming more upright and active each day.
The packages and deliveries sent from friends and family made the recovery very special for her. Thank you to everyone for the gifts, calls, cards, texts, and visits. Her favorites were the big balloon delivery from the Brownley family, the very special blanket knit by the ladies in Centerville, the sticker dolls from the Stobe's, a fingerprinting kit from a former student of mine, and various coloring books and crafts brought and sent by so many people. Steve and I appreciated the meals brought by friends, and Carolyn was so thrilled when her friend Annie came for a surprise movie date. Carolyn told me that surgery was soooo much better than a birthday because she got sooooo many gifts, more than she would get on her birthday. True. We are blessed with such a supportive family and friends.
Although she was born with this issue, I am not sure why it just became apparent now. It has been a challening 5 months; she had her first confirmed kidney infection just before Christmas, following a two-week bout of influenza. The anxiety and worry that came with these repeat infections, the questions that came with the diagnosis earlier this spring, and now the stress of surgery and recovery .... I did not sign up for this part of parenting, but I am glad we are able to (hopefully) put this behind us. In a couple of weeks, she will have follow-up evalautions to assess the health of her kidneys and the state of reflux (if any is left). She will stay home with us until she can move a little more freely. She is determined to be back to school for the end-of-year field trip to the bounce house and her end-of-year ceremony. Both are on May 23, and I have no doubt she will be back by then. Probably the week before. Right now, she is looking forward to Grandma Lynn and Grandpa Mike arriving tomorrow morning. We are happy for their visit as well, especially because I have to go out of town to Boston to train research staff for a few days this week.
Oh, and by the way, Carolyn told me that she wants to be an anesthiologist when she grows up -- maybe I better learn how to spell the word.
1 comment:
Got the word from your mother that she was doing well and had tolerated the surgery well. Glad to hear they found out the problem and were able to do something about it. Aren't the doctors/nurses at childrens' hospitals amazing people? Give her a big hug and kiss from her Great-Great Uncle Harry and Great-Great Aunt Margie and tell her we're glad she's on the road to recovery. Being a parent is tough when you have to watch your child go through something like this.
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