Jesse's Surgery update, April 21, 2000
We had been planning and waiting for Jesse's first leg lengthening surgery for over 4 ½ years. During that time Jesse had undergone two major corrective procedures. The first procedure (at 18 months old) was to fix the angle of the femur bone (thigh) as it enters the hip socket. This operation lasted about 7 ½ hours. The second procedure (at 3 years old) corrected the angle of the hip socket, relocated where the ligaments attach, and rebuilt the knee. This operation lasted 9 ½ hours. Now we were ready for the actual lengthening, something that would produce results you could see. Inches.
We traveled a day earlier than planned to Baltimore on Saturday January 22nd to miss a snow storm that was predicted for Sunday morning in Raleigh. The surgery was scheduled for 8:00am Tuesday January 25th, 2000. We'd waited too long for this operation to allow ourselves to get snowed-in the day before! The storm only dropped half an inch of snow in North Carolina, but we were glad we didn't take any chances of getting stuck .
On the morning of the operation, the Kernan hospital called us at 6:30am to tell us that all surgeries scheduled for that day had been cancelled due to a surprise blizzard that hit overnight! Thinking this was some sort of joke, we looked out the window and saw 14 inches of white powder covering everything. How does the saying go, "the best laid plans…"
The operation was eventually able to be rescheduled for January 26th, the next day. We were told this procedure would be around 5 hours long. That's what they said about the first two procedures! To our surprise, Dr. Paley came out after only 3 hours and told us he had finished. He was very pleased with the surgery. Everything went perfectly. Although he was done, the rest of the team spent another hour sewing him up.
Jesse now had a device attached to his leg called a "fixator" , also known as an "ILLIZAROV" , named after the Russian doctor who perfected it. Each fixator device is constructed differently, depending on what type of procedure is being done. Jesse's fixator is 2 full rings and 2 half rings that go around the leg. Attached to the rings are 7 stainless steel surgical pins (about ¼ inch diameter) that enter into the leg and are screwed into the upper and lower bone. The bone is then cut in the middle. Rods that have screw threads along the entire length of the rod, run parallel outside of the leg attaching the rings to each other with nuts on either side of the ring. The nuts on these threaded rods are turned daily to push the rings apart, thereby pushing the pins that are in the leg apart, which in turn push the bone apart. This is done at the rate of about 1 millimeter a day. The bone continuously grows new tissue in the gap, which does not solidify until the screws are stopped from turning and the bone is not pulled apart any further.
The lengthening phase of "turning nuts" is about three months. After turning is stopped, the fixator remains on the leg for another three months while the bone solidifies. When the fixator comes off, a full leg and hip cast is then worn for another three months to let the portion of the bone that had the seven pins screwed into it heal. We started Jesse's turns on Wednesday February 2nd, 2000.
There is another very important part of this procedure. Daily physical therapy. It is of no use to have a longer leg if it doesn't work properly. Muscles, arteries, veins, nerves, tendons, and ligaments are not rubber bands. It takes rigorous daily physical therapy to make these parts of the leg grow longer and continue functioning correctly as they are stretched. This is the most critical part of the lengthening process. It is also the most painful. We cannot at this time accurately describe the amount of pain that Jesse has endured.
Our plans were for Dawn to spend the first month in Baltimore with Jesse attending the specialized physical therapy center located at Kernan Hospital. Then she would return to Raleigh for the final two months of physical therapy, returning to Baltimore every two weeks for his required check-up.
The required amount of therapy is 3 hours a day, 5 days a week. The physical therapy at Kernan hospital is devoted solely for limb lengthening patients. That's all they do there. They are probably the best in the world at this specific type of therapy, growing limbs longer.
When Dawn tried to arranged for physical therapy in Raleigh, she found that nobody had this specific type of experience. She was told that the most therapy they usually do is half an hour a day, 3 times a week. She finally found a therapist, with our insurance company, who agreed to do one hour a day, 5 days a week. On February 26th, Dawn and Jesse came home from living at the Ronald McDonald house for 36 days.
After almost two weeks of physical therapy in Raleigh, it was time for Jesse to go back to see Dr. Paley for his two week check-up. We felt that the therapy was going ok, but were not sure. Dawn took Jesse and Victoria up to Baltimore for a one night stay on March 8th. The appointment was in the morning, and she would drive back afterwards. The best laid plans…
Dawn called me at work after the appointment sounding a little upset. Dr. Paley gave her some bad news. The therapy in Raleigh was not doing the job. Jesse had lost a lot of knee-bending range. He was at the bare minimum bending range. Any more loss and we'd have to stop lengthening. Dr. Paley instructed us to stay and re-enter the clinic in Baltimore or stop turning. So Dawn and Jesse have been in Baltimore for the past 45 days, except for one weekend trip that they made back to NC. Thanks to the Ronald McDonald House in Baltimore, they now have a 1-bedroom apartment instead of just a single room as before.
The kids have been all over the place. Dawn's parents traveled to Baltimore and took Victoria back to Ohio for 3 weeks. Taylor and Shawn were in school at home for the first two weeks that Dawn went back to Baltimore, then they "tracked out" (year round school's four week break) and went up to stay with Dawn and Jesse for the entire break. All four kids are with mom right now and are travelling home for the long Easter weekend as I write this.
Right now, we have stretched Jesse's leg about 2 ½ inches. We were able to cut 2 inches off his platform shoe that was 6 inches high. The most we think we will get this round is going to be 3 inches.
Taylor and Shawn go back to school Monday, April 21. Dawn, Jesse and Victoria will return to Baltimore also on Monday. But only for two more weeks, then it's home for good. We will stop turning on May 5th, and with the stoppage of the lengthening phase of the procedure, the physical therapy gets much easier. We can therefore resume the therapy in Raleigh, and everyone comes home. We only have to go back for the check-ups every two weeks. After about three months, the fixator comes off, then the cast, then we're done!
So hopefully, it's all down hill from here. Ah, the best laid plans…
Keep a look-out for future updates.