I know that I'm behind on my blogging, but I try to update everyone on Kadence's castings as quick as I can. Here's Kadence before her casting with daddy. She is showing me her new Tinkerbell toy that the recreational therapist spoiled her with. In her lap is her new stuffed animal that she named "Gobull" I have no idea where she came up with that name, but if you say it wrong she sure does get upset.
Kadence and mommy!
More pictures mom?!
Kadence's new pink cast!
Now for all the details:
We went in for Kadence's 5th cast. She wanted pink and although that is not my favorite because of how bright it is, pink is what she got. We arrived at the hospital to find that Kadence had a roommate.....who was still asleep. Kadence usually doesn't have a roommate, but it wasn't too bad. Kadence was very good at being quiet so Dulce and her daddy could get some rest. The Dr's had a complicated case before Kadence which kept us waiting (and fasting) until about 11. Then the Dr. Mike (The PA who we work with) came and asked if Dr. D'Asteou and him could film Kadence and use her in their brochures and trainings. We of course said yes because it is helping teach other Dr's how to do the casting which means people might not have to travel as far to find a good Dr who will cast their child. Dr. Mike was SO excited we said yes because Kadence is such an agreeable girl. She will let them do what they need to without crying and will hold still for a picture in between. They got her all ready for surgery and took her back. Again, she didn't cry. David and I went down to the cafeteria to eat lunch. I didn't get very much to eat because I figured I would be fine until 3 or 4 when we got to go home. Kadence's Dr told us that the surgery went well and that she was in recovery which was the usual story, thankfully. When Kadence got back to the room she was on oxygen which hasn't EVER happened before. We kept trying to take it off and have her breath on room air and she would only last about 2 minutes before we had to put the oxygen back on. She was really struggling. We finally got to a point where she was stabilized right around 92 so we took her to get her x-ray and then to the cafeteria for some food. It was between meals so she didn't have a lot to choose from unfortunately.
After she ate a few crackers and some watermelon we talked to Mike about her x-ray. He showed us how her curve is still at 47 degrees which is where it has been for the two casts before this one. Her lumbar now has a tiny curve which wasn't present in the casting before this one. (She used to have a curve there, but they had fixed it and now it's back) He is pretty optimistic about fixing it again because her spine is still very flexible. He is not very happy with how slumped to the side she gets almost immediately after coming out of a cast. He could physically push her top half of her body about 4-6 inches over which is bad because without the cast she regresses very quickly, but good because she has a lot of flexibility in her spine still. Mike then informed us that we will be doing the follow up MRI in August. I think I posted in the last cast update, but I'll post the info again. When she was 1 she had an MRI that we were told was fine, then we were told it wasn't and then again that it was. Mike reviewed the other Dr's notes and the actual MRI and said that is wasn't fine. It showed what's called split cord which very literally means her spinal cord splits into two. This would NOT be good. He said that usually children with split cord are very handicapped and Kadence is so normal so he is just confused by the whole thing. The last MRI also showed that she had fluid in front of some of her vertebrae which would also not be a good thing. He is hoping that a follow up MRI at an older age will be easier to read and will give a better view of her spine and better insight into how to treat her.
We went back to the room and the nurse had us sign our discharge papers. She then realized she needed a final set of stats before we left and so she did the usual temperature, blood pressure, oxygen and pulse. Kadence's oxygen was low again. She told us we could go play and she would come test it periodically. Once she got two good readings in a row we could go. Kadence was excited to go play and didn't seem to mind having to stay, but at this point she was SOOO tired and so was mom and dad. She rode a tricycle around the play area (That is bigger than a basketball court) and ended up having an asthma attack. We were able to get an order from the pediatrician on call that enabled us to use her inhaler. Her oxygen wouldn't go above about 89 so we had to head back to the room to lay down and get her on oxygen. Every time we tried to get her breathing room air, she would drop so we would have to put the oxygen back on. We started realizing that we might be staying the night which was not the best news. Shelby is sick with a cold and didn't even have enough diapers packed for an overnighter, and David has absolutely no more sick days left. He actually borrowed a day from a colleague to be able to come to this casting so there was no way he could take a day off. We kept trying her on room air and did this until about 8 when she finally stabilized. The prayers worked! We were able to go home. The respiratory therapists said that since we had a pulse/oximeter and oxygen at home that we would be fine to take her home as long as we checked her throughout the night. Kadence hasn't dropped since and has stayed at a steady 94 which is such great news!!
Kadence will be in this cast for 6-8 weeks (Whenever we want in that time frame) and then will be in a brace for a few months. She was able to go down and pick out her brace design and picked a white one that has pink and purple butterflies on it...with pink straps. We're thinking of getting it off on July 1st which would be before her birthday parties, before 4th of July, before a family camping trip and right in the middle of our 6-8 week time frame. (It's exactly 7 weeks) Hopefully the next 7 weeks will go by quickly and she will adapt quickly to her new cast. She is such a strong girl and never complains about having a cast. I don't know how she can be so happy when she has to go through so much. She is constantly teaching me how to be a better person and take my trials with a smile. I love her so much and so does her little sister Shelby who was so excited when we finally left the hospital yesterday!
