Well, here we are in sunny Florida. We arrived after a three day journey of 26 hours of driving that started on Friday and ended on Sunday. We were all ready to be out of the car and enjoy a couple of days of fun before pre-surgery appointments began. Tuesday we had our pre-surgical appts and realized just how aware of everything Madi now is. As soon as we entered the room with the nurse she looked at the blue chair where they do the blood draws and began to say "no shots", "I want to go home". She clearly remembers everything now which she hasn't in the past. That makes it harder. We ended up having to wrap her up in a blanket and hold her down just to take some blood. It was awful. So hard to watch your child so scared and remind yourself that its all in her best interest. After we finished our appts we had half of a day to play. Madi really wanted to swim since the last two days were rainy so we took her swimming and then to get ice cream and ride the carousel and train at the mall. We had a fun night. We kept her up as late as we could to get food in her tummy as close to midnight as possible. Wednesday morning arrived and we were surprised to get a phone call asking us to come in an hour earlier than we were supposed to. There was a cancellation and they were ready for us. That never happens! When we told Madi it was time to go she said "no, I don't want to go to the doctor!" She was really nervous. We got to the hospital and were taken back pretty quick. I could tell she was scared but we kept reassuring her and she relaxed a little when they gave her a dvd player to watch some Strawberry Shortcake.
Our time to go back came quickly and I dressed in my "bunny-suit" to take her back to the operating room. Unfortunately they gave her the "goofy juice" too late and it hadn't taken effect yet. She was very scared but I stayed with her every step of the way. She fought the mask with the anesthetic and was crying so much. It was so hard to watch as a mom. I just kept talking to her and reassuring her that everything was ok and that I was right there. When she drifted off to sleep I gave her a kiss and took her bear and was walked back to the pre-surgery room sobbing. I've done this for four surgeries now and it never does get easier. Mikey and I settled in the waiting room for the long wait. They ended up taking her back to the operating room at 11:20am and around 5:30pm Dr. Paley headed out to tell us that everything went really well. Her fixator was on and he did end up having the fixator go up to her hip so that the extra pins would help protect her hip joint during the lengthening process. We knew that was a possibility and I figured anything that protects that hip that we worked to hard to make was good with me. He also removed the 8 plate that was in her femur and put a new one in her tibia. We were able to go see her in recovery a couple of hours later. She was smiling and happy! She always wakes up from surgery so peacefully and for that I am grateful. She just kept saying she loved us and telling the nurse all sorts of random thoughts. The nurse was amazed at how well she was doing.
We got settled in her room shortly after and settled in for the night. She had a good night and got some sleep. The next day she seemed really nervous and scared. She just kept crying but when we asked her if anything hurt she would say no. We soon realized that she was hurting but not telling us. We got her started on the pain meds and then she started having the muscle spasms. The spasms would jolt her whole body and were very painful for her. We started her on the valium and it helped a little. Physical therapy really wanted to get her up into her stroller for a little while so Mikey picked her up and got her in the stroller. She was nervous but didn't seem to have too much pain with it. It was good to see her up and take her for a little walk to get some fresh air. After we got another dose of valium and continued the pain meds the spasms seemed to get much better. Madi slept most of the night last night and felt really good in the morning. Madi got to meet three new friends today which made her really happy. Two of them have fixators just like she does! We even got her to stand up with physical therapy and take a couple of steps with the walker. She was so brave. We got her in the stroller again and all she wanted to do was walk and go see her new friends! Madi decided to name her fixator Arcee. For those of you who don't know, Arcee is the female transformer. She loves watching that cartoon with her dad and sister. She is still so excited for Arcee to make her leg longer.
We are hopeful that she will be able to get out of the hospital tomorrow. Her blood counts have been low the last couple of days and there is a possibility that she may need a blood transfusion. We will see when they get the next labs done in the morning. For now she is doing well and she is anxious to get back to the townhouse. Thank you to all of you who are praying for Madi. We are so blessed to have such a huge support system. We are also so thankful for the new friends we have met here in the hospital and it feels good to know that Madi will not be going through this journey alone. I will post again when we know more!
