Jordan had her test at Children’s Hospital on Monday in an ongoing attempt to find out what is going on with her bladder and kidneys. We had to get up at 5:00 am to make the long drive to the hospital. She didn’t want to get up at all. She told me… “Mom, Leave me alone!” “I’m sleeping!” I felt terrible for making her get up, but I got her dressed and Ronnie went out to warm up the car. It was only 18 degrees outside, and my windshield wipers were making yucky scraping sounds. I had to go get hot water from the house to dump over the windows so I could see because my defroster wouldn’t work well enough.
We had an uneventful trip down there, and we sang Carrie Underwood and Lady Gaga songs all the way there. (We have musical ADHD in case you can’t tell.) We were trying to stay awake and cheerful. When we got there we had good parking karma and got a spot right in front of the doors. Thank goodness because like I said it was COLD! We went to check in, and they sent us to the surgery wing because she was having anesthesia so she wouldn’t be traumatized by the catheterization.
The woman at the surgery desk said, “Is your daughter having surgery?” Jordan said, “Oh no I’m not!” “Mom, you didn’t say anything about SURGERY!” I had to calm her down and explain to the lady simultaneously that it was just a test, but we were going to be in the surgery wing. They walked us back, took her blood pressure, gave her a pile of stickers, put her fabulous bracelet on, and then installed us in our very own room. She fussed a bit while got in her gown. (With pandas on it “Just like Ni Hao Ki Lan”.) Then she settled in with her coloring book and colors that the hospital provided.
The coolest thing about Children’s Hospital is that they have a child advocate come around with a book that explains procedures, and what goes on in each room. They let her ask questions, and she got a neat little kit with doctor equipment. Gloves, hat, band aid, syringe, and shoe covers all made for a very happy little girl. She didn’t even complain that she hadn’t had anything to eat or drink because they promised her popsicles when she came out.
When it was her turn, they came and gave her some “goofy juice”, and then took us downstairs. I can report that the “goofy juice” did indeed make her goofy. While we were in the pre-surgery area she looked up at me and said, “Mom guess what?” “I’m a cheetah now.” Hmmm. Okay honey!
In the next bed over, they had a little boy with his parents, and they were taking pictures of him. She looked up at me indignantly and asked me why I wasn’t taking HER picture. So, I had to pull out my camera and snap a few. She was happy and quieter after that.
When they came to bring her back, one of the nurses told her that she would be with her the entire time. Jordan looked at me and started crying, and yelling “I want my Mommy!” It broke my heart. I told her I would be there when she woke up, and I stood there while they wheeled her back. After that, I had to go into the waiting room. I noticed that there was a gift shop right next door. I went in and bought her the biggest balloon I could find. It had all 5 princesses on it and was bigger than she is. I also bought her a Ring Pop going with the theory that suckers make everything better.
It only took about 45 minutes, and Dr. Roth came out and told me that anatomically everything looks okay. The left kidney that is down in her pelvis appears to be functioning well. There is no extra ureter tube from the pelvic kidney like they thought. So at this point they have no clue why she’s still experiencing incontinence. He said that there is one more test he needs to do called urodynamics. That test will determine how strong the muscle that holds her bladder closed is, and how much pressure her bladder muscles are applying. The concern is that she may have a spastic bladder due to the cerebral palsy. The treatment for that will be muscle relaxers, which concerns me. I worry that if she takes muscle relaxers, it will effect her walking.
After my talk with the doctor, they came and got me because she was awake. When she saw the huge balloon her eyes lit up. I told her I was sorry that I had to go in the waiting room, but everything was done and we could go home soon. She informed me that she wasn’t worried. She knew I’d come get her. *Sigh. I’m glad she wasn’t worried. I am sure that I do enough worrying on my own for four or five people at least.
We were moved out of recovery and back into our old room with the Disney channel. Watching television kept her occupied enough to only complain a little when they removed her IV. She got to eat popsicles and drink juice, and when they were sure she was keeping it down, we got to go home. On the way home she sucked on her Ring Pop loudly in between singing Taylor Swift songs, and we were happy again.
I’ll keep everyone posted when the next test happens, and what the results are. Thank you all so much for your prayers and kind thoughts for her. Yesterday, I made this layout as my week 2 assignment for the 52 weeks project I’m doing. I wanted to remember how brave my girl is.
You can click on the image to see it larger with a full description.
Journaling: You are an inspiration to me. You have had to fight so hard to get to where you are in life. You face adversity with courage and grace. I know I’m your Mom, but I want to be just like YOU when I grow up. –Jordan Jasmine