After a several days of hospitals vistis I can say that I am done with Doctors all together. Andrew's tonsillectomy went ok. My dad and I had to hold him down as he was fighting us coming off the anesthesia, but with morphine he calmed down. That hospital stay was weird. We had to share a room with another little girl that had the same surgery performed. It was quite fun trying to eat my dinner Friday night and listening to her vomit all over the room after eating chocolate pudding. After being woken up by her whining I vowed to my mother that
I would never have a daughter. It was really bad and her whole family slept in the room that night. Andrew ended up staying a little longer because his oxygen count was low during the night. I will never forget being woken up by a large nurse at 11 pm telling me to wake Andrew up so that he could take his antibiotics. She said it was the only way he could get better. I went off on her and told her it was one of the reasons that he is autistic and to not ever say that to me again. Wow! One neat thing was that while we were getting him ready for surgery the admitting nurse let us know that her 5 year old son has autism and that she too takes him to Treehouse Pediatrics. In fact his son has the same ABA (applied behavioral analysis) therapist. She was so sweet and I thought that was cool.
I took Andrew yesterday to Methodist Childrens for his 24 hour video EEG. It was an interesting experience. After getting there at 8:30 the assigned time, they did not put electrodes on him till 1:30 in the afternoon. What? We were a little frustrated by how slow things were especially knowing that he had missed therapy yesterday morning. The thing that was hard for him was sitting in the bed the entire time. He could not stand, get up and could barely move around for 24 hours. There are not enough videos for that. We were on the hematology and oncology floor so we got special treatment from their nurses as their patients usually stay for several months. When we got home today I called the neurologist to see when we would get results and I was told that I had to schedule an appointment for that. The earliest aptmt is Feb. 21st. Can you believe that? Even after I explained that we were trying to make sure he was not having seizures this was the earliest time they could get us in. Felt says he will call to complain in the morning but more than likely we will have to find another neurologist that can read the results. I am sooo done with doctors offices.
I guess I need to go and take my chill out medicine for the night. I am just realizing how hard it is to manage all of this and I wish there was a way that I could stay at home with him. We are very blessed though I know that Andrew is such a special boy and I feel very lucky to be his mom. Even with all of his challenges he has special gifts to show all of us everyday.
Rett Syndrome. One year Post Surgery
3 months ago