During the recent holiday season, I’ve noticed several fund-raising commercials for Shriners Hospitals for Children and every time I see one it takes me back to those days of which I am still very grateful. The day we found a Shriner to sponsor Angie was a huge blessing. It was easy too. I just called the local Shriners organization and within a couple of days, a gentleman came to our home for a visit. Shortly after that, we had our first appointment at their Crippled Children’s Hospital in Lexington, Kentucky (about 100 miles from our home). Now, I bet you’re wondering why I would choose to drive that far, right. Well, when Angie was about five I started looking for an alternative to our local Children’s Hospital largely because of an experience at an appointment with a very well-respected doctor. When he suggested another surgery that he thought Angie should have, I started asking questions. Since Children’s was a teaching hospital, there were several residents in the appointment with us, so instead of addressing my questions, he looked at his residents and basically told these young doctors that I was clueless and that I didn’t understand how great he was. He said this in front of me as if I couldn’t understand him. Since I did, I took Angie and told him we were leaving. This was a very lucky day for Angie and me because it led us to Shriners. Our first visit was a routine initial visit, with x-rays, occupational and physical therapy evaluations and a consultation with an orthopedic surgeon. The surgeon suggested that Angie have muscles releases performed for her knees so she would be more comfortable in her wheelchair. My Dad and I listened, took notes and left with decisions to make. This was actually very similar to what the doctor from Children’s Hospital in Cincinnati was recommending, but different because our questions were answered with respect and there would be no hospital bill. The doctors who worked for Shriners worked for a salary and didn’t make any more or less money if they did surgery or not. The Shriners had fundraisers that were able to completely support their hospitals back in the 1980s. This seemed too good to be true and Angie really needed help. The truth was Angie was severely spastic. In other words, certain muscles were extremely tight, meaning that they continually fired and this stressed joints. Other muscles didn’t seem to fire at all. That’s why over time her feet turned in at the ankles and her hands turned down at the writs. Due to her brain damage, the messages her brain sent her body short-circuited. In other words, certain muscles were told to constantly fire, even in her sleep. Over time this damaged joints and tendons. This is where the deformities come from. So orthopedic surgeons try to keep her body from getting so tight that she can’t be dressed or sit in a chair by using surgery to release tendons and lengthen muscles by cutting some muscle or tendon fibers and then ordering physical and occupational therapy to maintain what they did. With the support of my family, I decided Angie should go to Shriners for the surgery and my parents would keep her little brothers at home with them, now ages five and one. I would stay in Lexington at the hospital with her. Angie did well and I was able to be there for her. After her first surgery, we would continue going to Shriners until Angie turned 21 when she was no longer eligible. Every 6 months my Dad would drive us to Lexington for our bi-annual appointment. And Angie was reasonably stable until she hit puberty. It seemed like overnight her body started to curl to her right. When we got to her appointment we discovered her spine had developed a very severe case of scoliosis. I can’t remember the exact percentage of the curve, but she went from a person who could sit comfortably, albeit with a lean, to someone whose rib cage actually touched her hip bone when seated. This was a dramatic change within six months. Apparently, puberty causes more physical changes than people realize. I was shocked and I think the doctor was too. So, she was scheduled for a spinal fusion as soon as possible.
Once again, my wonderful parents agreed to take care of John and Matt while I took Angie to Lexington. The surgery itself went well. Her doctor put a Luque L-Rod* in her back from the base of the neck to the end of her tailbone. And then he put her in a full body cast to hold her spine stable until it healed. I remember that he was very pleased with both the surgery and the cast because she would be able to sit up and lie down due to the hinges he had added to the cast. Everything seemed to be going very well at first. It didn’t take long for me to realize that the trauma to her system had destroyed her appetite. She refused to eat or drink anything, so she couldn’t be off the IV. She was in trouble. *(Luque L-rod instrumentation with segmental sublaminar wiring has been widely adopted in the treatment of neuromuscular scoliosis because it provides rigid fixation and allows early mobilization without external support (Luque l982a,b; Boachie-Adjei et al 1989; Broom, Banta and Renshaw 1989). Angie had always had feeding problems due to her CP but she loved food and generally ate very slowly but well. After this surgery, she refused to take anything by mouth and started losing weight rapidly. I could see it, but the doctors had no way to tell how much she weighed or how much weight she was losing because the cast was very heavy. I kept pushing them to do something, but they were slow to react. Since they hadn’t thought to weigh her immediately after her surgery they had no proof of her weight loss, but I knew. An IV does not replace meals, so I could see that her little body kept getting more and more emaciated. I was starting to seriously worry that she was going to die. It was very frightening. Finally, her doctor agreed to start an NG tube, a tube inserted through the nose into the belly, where they would give her actual nutrition, something like Ensure. And gradually things started to turn around. She got more bright-eyed and her color began to return. She started to smile again. We were at the hospital for about two months, which was long enough for her to heal enough for the cast to be removed. When she finally got weighed we discovered that she had lost about half of her body weight. I know at her lowest she weighed under 40 pounds. She was almost 14 years old at the time. I had taken a leave of absence from teaching so I could stay with her and realized that if I hadn’t been able to do that we may have lost her. I also understood that sometimes parents have to push really hard at doctors. Angie had an excellent doctor but even he needed to be pushed because he didn’t know my child like I did.