Cast day has come and gone again. I am not sure I have fully processed the day. You would think, having done this 6 other times, that I would be fully prepared for whatever cast days throws at us. Man oh man was I wrong.
This cast day completely kicked my butt. I was physically and emotionally exhausted. To be fair, we asked to switch cast days. Kiya was supposed to go in the week before but we wouldn't have been with two of my closest friends and cast day is not good without them. I refused to be given any time other than the last cast of the day. They usually take the kids in order youngest to oldest and I didn't want anyone else's kid to get bumped down because we asked to switch. Kiya was the 6th kid to get a cast that day. We reported to the hospital at 9am.
After we got checked in we went straight to xray. This is where the day started to go awry for us. Kiya knows who Mr Tom is. She knows that he takes pictures of her back and then she gets a beanie baby and a sticker or two. Mr Tom was not there when we went down to xray. It was a whole group of women that we had never seen before. They were nice but took Kiya and had her stand for her xray alone. We were told to walk on the other side of the wall and wait. With Mr Tom, he lets us wear a bib and stay with her. Kiya being the amazing kid that she is was fine and followed directions like a champ. Kiya got her stickers and her beanie baby and then the told us to leave. I had to ask to see the xray. Mr Tom knows we want to see it. I saw it and my heart sank.
At this point it was about 10am. We had A LOT of waiting to do. Kiya watched A LOT of TV and we went for a few walks. She started asking for a snack or some juice around 11am. Poor kid hadn't eaten anything since about 8:30 the night before and had just a few sips of water around 7am. We stalled. We explained that she could eat after she got her cast. She accepted it and moved on. She asked again a little later and we just reminded her that she didn't have her cast yet and again she accepted and moved on.
Finally around 12:30pm we were called back to pre-op. Kiya knows this is where she has to drink the orange medicine (aka Versed). Per Kiya this medicine is sour. We had to hold her down and force her to take the medicine last time. This time we just talked about the medicine for a few days prior. We told her that she needed to take the medicine or she had to have a shot (aka an owie). When we got to pre-op, she was told she could have a sticker after she took her medicine and some bubble gum flavored drops. She directed the process and told Ruby "just a little first." We tried to tell her to drink it fast but she did it in 3 sips and then immediately said "Princess sticker please".
Around 1:30 they called her back to surgery and we went to grab some food. It was just about 2:30pm when we ran into Dr. H. He and Linda sat down and chatted with us. It wasn't good news, it wasn't bad news but it was merely the same. A wise friend told me same is good so I went with that even though I was deeply frustrated. We have been at this two years almost and we have no end in sight. He told us surgery wasn't an option right now since Kiya is so flexible and gets into the 12-17 degree range in cast. He then said we could continue casting or brace. We can do cast. Brace is the unknown and she is still at 46 degrees out of cast. So back again in 12 weeks and likely 12 weeks after that and 12 weeks after that until we are all ready for the next step.
The day had been emotional and full of unknowns for all of us and after our chat our day got let's just say really interesting. I am not proud of my behavior during taping/cast trimming. I was grumpy, moody and borderline rude. Kiya was HYSTERICAL and ANGRY and fighting every piece of tape and padding. I finally made them all walk away and give her a minute to settle, eat a graham cracker and drink some juice. Kiya was much better the second go round and even helped hold the tape.
The highlight of this cast trip was the amazingly fun pool party. Kiya was hesitant at first but saw others jumping and splashing and a switch flipped and she turned into part daredevil and part fish. She wanted to jump in and she was trying to swim. She kept putting her face in the water and even went underwater a few times. She loved it and the best part was she got to play with her cast buddies outside of the hospital and I got to hang out with some really cool moms. I am truly blessed to walk this path with these amazing women and their kids and families. It makes the tough days doable.
In hindsight our day wasn't great but it could have been a whole lot worse. My heart aches for my friends who faced bigger let downs and more questions on cast day. I should quit my whining and really except that same is good. Easier said then done but I am working on it. Sending hugs and prayers to my amazing support system. I couldn't ask for better friends. It is more like a marriage really as for better or worse we will always stand beside each other. Can't ask for much more than that.
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