It has been a crazy month. To start out with, Maddie had surgery on her right hip. It is a big surgery for a fourteen year old girl to deal with. They have to cut entirely through her bone, rotate it to the proper angle, and then place a plate and screws into the bone to hold it in place. She had the left side done last year. I knew how tough she was from that one, but she has absolutey amazed me with this one. She came home a day earlier, only took pain meds for two days, and went back to school after a week. I am so proud of her!
James had his preschool IEP, and had his intrathecal baclofen pump trial. It was Maddie's first day back at school, but I couldn't reschedule the trial because the next date available wasn't until January. It was hard to juggle getting all the kids to school, getting to the hospital at 7am, and making sure that she had someone who could bring her home if need be at a moments notice, but between my incredible church members and my family, it worked out. I also worried about how he would react to having to lay flat for that long and of course, whether he would be stable or pull something funny. However, he tolerated the insertion of the baclofen into his spine with little crying, and for the next few hours was very happy. He laughed at every little thing. I think he really enjoyed the feeling of not being so tight. The doctors said that they felt it was a successful trial and that they rarely saw anybody that they felt so strongly about saying "this is the right course of action for this kid." They sent the referral to neurosurgery for the pump implantation and told me to call for an appointment. I called on the way home and they had one the next day! Neurosurgery is usually booked out for the next twenty years.
Things seemed to be fine until 4am the next morning. James woke up and wouldn't go back to sleep. He would throw up whenever he was moved even slightly and was becoming increasingly irritable. By 7 am he was screaming. He had a spinal leak with a spinal headache. The treatment was to increase his fluids (thank you for g-tubes!) keep him completely flat, in the dark, cold pack to his head, and give him non-carbonated caffeine down the g-tube. I sent my youngest daughter over to the gas station for a small coffee. The whole time I was picturing her telling the clerk that it was for her little brother, and thinking that I must be crazy to be giving my already irritable special needs kid caffeine. Call me Brittney Spears. It was even hard to explain to my husband that it was a good idea because it constricted blood vessels in his head. Amazing enough, it all worked and about noon he was calm and no longer screaming or throwing up as long as we stayed flat and still. I realized I couldn't get James up to the neurosurgeon and still keep him flat and so I had to cancel my appointment. Now the pump probably won't be implanted this year. The discouragement got to me a bit as I realized that our huge 5600 deductible would be up again by then and that it would mean another round of botox like last time before pump implantation. I am so tired of this poor kid being put through so much. However, I don't know what I would have done without good neighbors I could call at the last minute and ask them to take my kids to school and bring them home, injured Maddie and all! I had treats show up on my doorstep and dinner brought over for three nights.
Lastly, I found out the James is having an odd breathing pattern and choking when he is upright because he has a condition called laryngomalacia. He is scheduled to have surgery on his airway on November 12th. Yep, I live at hospitals. If I am not in one with my kids, I am in one at work. Sometimes being a nurse is too close to everyday life.