Today was another round of the Botox under Sedation for Cassie. Overall, I felt the day went allot better than last time. Cassie started to get anxious about the Botox procedure on Sunday afternoon. She had one short cry where she verbalized her anxiety and tried to talk about her fears. Chris did a good job distracting her and changed the subject and the rest of Sunday went okay with no crying episodes. Sunday night Cassie easily took her .5mg of Ativan and had a good night sleep. She knew she was not allowed anything to eat or drink after 2400. Bright and early this morning Cassie awoke and immediately started crying as she knew it was the big day. The tears melted Chris enough that he called in and took the day off work. A quick call to Gramma and Grandpa cheered Cassie up. They were already on their way to our house from Dunnville in hopes of seeing Cassie and offering support and encouragement. What wonderful Grandparents. We gave Cassie another .5 mg of Ativan, thinking it may calm her nerves allowing us to get through the morning. We told Cassie to lay on the couch and watch TV. Half an hour later she was zooming around the house skipping and running and she was chattering a mile a minute: the medication seemed to have the reverse affect. After Gramma arrived the morning went extremely well. Gramma has such a special relationship with our girls. She told Cassie funny stories and played with her and kept her busy as we got ready to go to the hospital.
Cassie had no behavior or tears the rest of the morning and she went willingly to Mcmaster children's hospital. We arrived at the Pharmacy where we were supposed to pick up the Botox. The pharmacist told us that Manulife had denied payment of the drug. The pharmacist made calls to Manulife but to no avail and we were told we would have to cancel the procedure. I went to talk to Nancy Goldie the RN and Dr. Mesterman. I was not quite sure what the problem was because we had sent Manulife all the required medical information and we were told it was approved. I was confused and disappointed and did not want the procedure to be canceled as Cassie had spent time with her Child life worker last week. She had taken 2 doses of Ativan and Chris and I had taken the day off work the let down was frustrating. After talking with the doctor I arrived back at the pharmacy to tell Chris we will have to cancel and found Grampa ready with his Visa card offering to pay the $1200.00 payment for the Botox medicine. Grampa bought the medicine and we thought we would have to battle Manulife at a later time and set about assisting Cassie through the procedure. Right away Chris got on the cell phone with Manulife while we took Cassie to the Pediatric sedation unit and assisted Cassie to get prepared to go to sleep.
The McMaster Pediatric Sedation Unit is a brand new bright cheerful unit. I noticed today that the unit has the most understanding professionals working with the children. Cassie arrived with an entourage of support people (Mommy, Daddy, Julia, Gramma and Grampa). We attempted to say good bye to the support people and just Cassie and I went into the room. Cassie asked for her big sister Julia and the nurses let her in. Then Cassie seeing Julia was allowed in asked for Gramma who they also allowed in. As Cassie's tears flowed, one by one everyone arrived until all five of her loving family were in the small room.
Each one of Cassie's supportive family played a part today in helping Cassie to get through her procedure. I was surprised not one of us was asked to leave. We are a loud noisy family and the professionals had to sort of work around us. The nurses all commented on how good Julia is with Cassie. JULIA IS THE MOST SUPPORTIVE, CALM, WONDERFUL, BIG SISTER!! She may have a calling in the medical field. Julia was instrumental in getting Cassie through the IV start and onto the bed and hooked up to monitors, BP and oxygen. I was busy answering the Internists questions, giving medical information and consent. They allowed me to go on the stretcher with Cassie in my lap the entire time. Cassie cried at times. Tara taught her it is okay to cry but at no time was Cassie overly panicked, she did not scream and she had control of herself the entire time. She was not in any distress and she talked through the tears. At one point Chris picked her up out of my lap, I snuck off the stretcher and Cassie layed on the bed herself. She was quickly sent off to sleepy land. I can't thank the wonderful Mcmaster team enough for allowing the entire family in the room. It was quite comical watching all five of us trying to please Cassie, the team referred to Cassie as the princess as she barked orders and we all jumped trying to do what she wanted. As we joked about the "princess we all practised Queen waves and Nancy Goldie RN distracted Cassie by discussing horses and Hannah Montana. I am so appreciative of my wonderful family. I am appreciative of the wonderful team at Mcmaster Children's hospital who understand children. They tried to make the entire procedure as pleasant as possible. They allowed the entire family family to support Cassie and worked around us.
With Cassie asleep we left her in the capable hands of the team. As we walked out of the room Chris shared the good news that after 45 minutes on the cell phone with Manulife they had found the approval for Cassie's medicine. Chris went back to the pharmacy and the pharmacist reversed the charge off of Grampa's Visa. Chris's patience on the phone payed off and Chris felt good that the bill had been worked out. Another victory for Team Fruck!
Cassie awoke after fifteen minutes on the recovery stretcher. She woke pleasant and began chatting with the boy in the next bed. Three year old Ethan who has right sided Cerebral palsy. She ate a banana Popsicle and had a special visitor Tara her child life worker who came with a big smile, lots of congratulations and a really nice present for doing a good job. The gift is sewing craft, a wonderful two- handed gift that is great for working on fine motor. This will be great for the left hand that just got the botox. I mentioned before how valuable the child life worker is and I can't say thanks enough to Tara. I feel the day was a success.
The muscles that received Botox today are the gastrocs, tib posterior, add. hall, add poll, pronator neres. Cassie does not need serial casting this time around but we will be working extra hard with therapy and exercise to strengthen up these muscles. Already tonight Cassie's foot appears looser. Her foot slides easily and flat into her AFO. Her big toe is not stuck up in the air. Cassie has no pain or redness from the injection sites. We will do as much exercise as we can and have plans for bike riding and a group of exercises to do at home. Hopefully Cassie's PT will have some time for her as well. More importantly, I feel blessed and happy for Cassie because she is a very lucky little girl who has a terrific family who love and support her (forever and always).
