[Congenital diseases] Chang-Wook finally received the Ilizarov surgery
Chang-Wook, who was born in February 2005, was diagnosed with achondroplasia in May in the same year. We also enrolled in Little People of Korea in December in the same year. Until now we were able to obtain lots of useful information through the regular meetings and seminars. We were also very glad to see other parents whose child has the same disease. Interestingly, I felt some type of unusual aura around the children and their parents who had already gone through limb lengthening with the Ilizarov surgery.
I think the reason is because I was in awe of the people who had already gone through or were going through the infamously painful surgery. At the same time, I was a bit worried towards the surgery, because there was a limit to how much I could understand doctors’ and members’ explanations about the surgery. I especially had problem understanding the logic behind using the external fixator, the importance of rehabilitation therapies, involvement of inflammation, and equinus deformity.
That time, one of the parents said “You will do it when the time comes, no need to worry about it now.” I still haven’t forgotten that. In mid-June of 2011, Chang-Wook received his surgery and lengthened about 8.9cm. How fast time flew by!
We made up our mind to have the surgery after talking to Y’s mother who lived in Busan. Y was one year older than Chang-Wook and had the surgery at the age of 7 just like Chang-Wook. She had a legendary record having 11cm of tibial lengthening. Y also has a mother who has a very nice and straightforward personality
Outpatient day in late May
It was one of our regular outpatient days. After taking pictures, we asked Professor Song about the surgery. That day we scheduled the surgery for June 13rd. He was still young but was able to lengthen up to 8cm without affecting the growth plates too much.
So finally we were about to face the Ilizarov surgery. Because at least one person had to be focused solely on Chang-Wook after the surgery, my wife resigned from her job.
After the surgery date was set, our whole family, including my wife, my daughter, and I were totally focused on the date and we could feel the intensity of anxiety increasing. But Chang-Wook was more worried about having to be separated from his kindergarten friends, rather than being worried about the big surgery.
Actually we had to think a lot whether we want to have the surgery before he started elementary school or middle school. We weren’t sure if he would be able to handle all the complicated surgical processes and the stress from going to school with children who were at least a head-length taller than him. Also, we weren’t sure if it is right to skip 1 year of school during his emotionally sensitive years, if he received it later in his middle school years. We were weighing the pros and cons, and decided that it was better to have it before he started his education. We also looked at Y’s case where she was able to lengthen such a long amount without much problem, and decided to take her as our role model.
We got a phone call from the doctor in change. They wanted to check Chang-Wook’s status 1 week before the surgery. We found out the reason was because it could have been harmful if he had any signs of common cold or coughing. So that whole week, we treated our entire house as if it was a sterilization room. Luckily, he had no health problem at home unlike the times he was in the kindergarten, so was able to be admitted to the hospital.
After hospital admission process, he got to know a good friend when were on our way to the sports center for some imaging. He actually had the surgery once day before Chang-Wook. He was 5 years older than him, but they became good influence and encouragement for each other. Even now our family keeps in contact with that family.
We signed the surgery consent form, and IV was put on him. We desperately prayed as we saw our son being transferred to the operating room. Not too long after that, our hearts sank when we saw the doctor in charge looking for us. He said that we should request for IV painkiller in case he felt too much pain during the surgery. So we requested it right away and were able to be relieved when the professor came out of the surgery and talked to us. After that, he returned back to the ward upon his gain of consciousness but didn’t feel much pain, perhaps because of the IV painkillers.
He had to delay sleeping midnight and blow balloons to remove all the anesthetic gas and recover pulmonary function. If that was too hard, they had special container for blowing out gases. Because blowing out the balloons was too difficult for a 7-year-old, he trained letting out big breaths for several days. The hardest thing right after the surgery was putting off his regular bedtime forcibly, but he coped with it quite well.
When the bandages were removed, we came across an external fixator that was totally new to us. Chang-Wook was shocked by the scene but we told him that it was his robot friend who would make his legs stronger. The robot friend who has been accompanying him since then for 6 months hasn’t bothered him at all yet. The doctor in charge was worried about inflammation and infection as other pediatric patients and their parents had told us. But gratefully, we never experienced inflammation thanks to my wife’s sacrificial disinfections processes.
He was discharged about 10 days after the surgery. Because it was in mid-summer, we prepared a short t-shirt and a pair of baggy pants. Because the external fixators have a big volume, it is better to where wide enough pants that would fit the rings, or cut the sides of the legs and put clip-on buttons.
During hospitalization, it was necessary to familiarize ourselves with the disinfecting procedures and the method for using crutches. But the most important thing was regularly lengthening the amount suggested by the professor daily. It was decided that we lengthen 1mm every day on both calves. There were 4 dices in one fixator and one dice shows a circle with numbers 1 to 4 around it. We had to turn it 4 times a day, one increment at a time, using the two little spanners. It could never be too loose and should be turned to the point where you could feel the tightness. So we decided to lengthen 4 times throughout the day – midnight, noon, 6PM, and at midnight once again. Even if you accidentally forget to turn it, it is important to cover the forgotten amount in a later time.
At first, we prepared these things for disinfection – a small and clean tray to put the disinfection tools, a thin and long tong-like tool called Kelly, round cotton balls (prepare enough), gauze sheets in the width of 3x4cm (prepare enough), saline solution, alcohol, and sometimes hydrogen peroxide and Bactroban ointment.
The part where the external fixator touches the skin is the major area for disinfection. I wetted the gauze sheets with saline solution and cleaned the operated areas and other calf areas. We cleaned the areas just to get ready for disinfection. When we wiped that part, Chang-Wook knew that disinfection had started.
We had poured alcohol into the cotton ball container earlier, and took out a cotton ball each time and squeezed it over the wounds first to avoid excessive alcohol absorption in the wounded areas. Then we used Kelly to clean the wound and my wife did it very meticulously. At times, we observed a small amount of blood or pus, or sometimes scabs. When there was scab, we dissolved that part with hydrogen peroxide and wiped it cleanly.
Of course Chang-Wook was suffering from pain but that didn’t stop my wife from what she was doing. We thought it was helpful when someone fanned on the side. We stopped blowing into the wound with mouth after judging that it could cause germs to get on the wound. Instead, we used a plastic or a paper fan. Months of continuous disinfection caused him stress and the skin to get irritated. Bactroban ointment was useful when he had little goosebumps.
After his discharge, we went to the outpatient clinic every 2 weeks for about 2~3 months. The professor told us that he had a relatively satisfactory condition. He exercised at the sports medicine clinic every time he went to the outpatient clinic, which I think it is important to have a regular and timely exercising and stretching schedule, since it is very important to lengthen the tendon as long as the bone. It was also a process Chang-Wookdisliked after disinfection.
Around the time he was going to get rid of the external fixator, he had had a relatively flexible ankle and knee and was able to stand on his own. I wished he could exercise walking with crutches since the very beginning, but it wasn’t something that could be forced. He is still walking and stretching steadily and regularly, in the hopes of not having to go through the equinus deformity surgery.
There were parents who suggested feeding him food with lots of collagen, but we gave him the food that he liked and just tried to increase consumption of dairy products. These days, he has been having small coughs and frequent colds these days, I think it is because of too much energy consumption during the rehabilitation sessions, more than because of the change of seasons.
But I wish I could have let him get more sunlight. This year he didn’t get to go out much other than the time he went to the summer camp in Busan area. I hope next year we can get a chance to go to the beach with his to straightened legs after we get those his robot machine removed.
The bone haven’t even solidified yet, but now he is familiar with the robot legs now and often boasts about his longer legs after he finds out during outpatient. I am so proud of him and hope his self-confidence grows as much as height. The Ilizarov surgery is done at the hospital, but the patient’s post-surgical well-being and successful rehabilitation therapies are all up to the family’s will and determination.
[Congenital diseases] Chang-Wook finally received the Ilizarov surgery
Chang-Wook, who was born in February 2005, was diagnosed with achondroplasia in May in the same year. We also enrolled in Little People of Korea in December in the same year. Until now we were able to obtain lots of useful information through the regular meetings and seminars. We were also very glad to see other parents whose child has the same disease. Interestingly, I felt some type of unusual aura around the children and their parents who had already gone through limb lengthening with the Ilizarov surgery.
I think the reason is because I was in awe of the people who had already gone through or were going through the infamously painful surgery. At the same time, I was a bit worried towards the surgery, because there was a limit to how much I could understand doctors’ and members’ explanations about the surgery. I especially had problem understanding the logic behind using the external fixator, the importance of rehabilitation therapies, involvement of inflammation, and equinus deformity.
That time, one of the parents said “You will do it when the time comes, no need to worry about it now.” I still haven’t forgotten that. In mid-June of 2011, Chang-Wook received his surgery and lengthened about 8.9cm. How fast time flew by!
We made up our mind to have the surgery after talking to Y’s mother who lived in Busan. Y was one year older than Chang-Wook and had the surgery at the age of 7 just like Chang-Wook. She had a legendary record having 11cm of tibial lengthening. Y also has a mother who has a very nice and straightforward personality
Outpatient day in late May
It was one of our regular outpatient days. After taking pictures, we asked Professor Song about the surgery. That day we scheduled the surgery for June 13rd. He was still young but was able to lengthen up to 8cm without affecting the growth plates too much.
So finally we were about to face the Ilizarov surgery. Because at least one person had to be focused solely on Chang-Wook after the surgery, my wife resigned from her job.
After the surgery date was set, our whole family, including my wife, my daughter, and I were totally focused on the date and we could feel the intensity of anxiety increasing. But Chang-Wook was more worried about having to be separated from his kindergarten friends, rather than being worried about the big surgery.
Actually we had to think a lot whether we want to have the surgery before he started elementary school or middle school. We weren’t sure if he would be able to handle all the complicated surgical processes and the stress from going to school with children who were at least a head-length taller than him. Also, we weren’t sure if it is right to skip 1 year of school during his emotionally sensitive years, if he received it later in his middle school years. We were weighing the pros and cons, and decided that it was better to have it before he started his education. We also looked at Y’s case where she was able to lengthen such a long amount without much problem, and decided to take her as our role model.
We got a phone call from the doctor in change. They wanted to check Chang-Wook’s status 1 week before the surgery. We found out the reason was because it could have been harmful if he had any signs of common cold or coughing. So that whole week, we treated our entire house as if it was a sterilization room. Luckily, he had no health problem at home unlike the times he was in the kindergarten, so was able to be admitted to the hospital.
After hospital admission process, he got to know a good friend when were on our way to the sports center for some imaging. He actually had the surgery once day before Chang-Wook. He was 5 years older than him, but they became good influence and encouragement for each other. Even now our family keeps in contact with that family.
We signed the surgery consent form, and IV was put on him. We desperately prayed as we saw our son being transferred to the operating room. Not too long after that, our hearts sank when we saw the doctor in charge looking for us. He said that we should request for IV painkiller in case he felt too much pain during the surgery. So we requested it right away and were able to be relieved when the professor came out of the surgery and talked to us. After that, he returned back to the ward upon his gain of consciousness but didn’t feel much pain, perhaps because of the IV painkillers.
He had to delay sleeping midnight and blow balloons to remove all the anesthetic gas and recover pulmonary function. If that was too hard, they had special container for blowing out gases. Because blowing out the balloons was too difficult for a 7-year-old, he trained letting out big breaths for several days. The hardest thing right after the surgery was putting off his regular bedtime forcibly, but he coped with it quite well.
When the bandages were removed, we came across an external fixator that was totally new to us. Chang-Wook was shocked by the scene but we told him that it was his robot friend who would make his legs stronger. The robot friend who has been accompanying him since then for 6 months hasn’t bothered him at all yet. The doctor in charge was worried about inflammation and infection as other pediatric patients and their parents had told us. But gratefully, we never experienced inflammation thanks to my wife’s sacrificial disinfections processes.
He was discharged about 10 days after the surgery. Because it was in mid-summer, we prepared a short t-shirt and a pair of baggy pants. Because the external fixators have a big volume, it is better to where wide enough pants that would fit the rings, or cut the sides of the legs and put clip-on buttons.
During hospitalization, it was necessary to familiarize ourselves with the disinfecting procedures and the method for using crutches. But the most important thing was regularly lengthening the amount suggested by the professor daily. It was decided that we lengthen 1mm every day on both calves. There were 4 dices in one fixator and one dice shows a circle with numbers 1 to 4 around it. We had to turn it 4 times a day, one increment at a time, using the two little spanners. It could never be too loose and should be turned to the point where you could feel the tightness. So we decided to lengthen 4 times throughout the day – midnight, noon, 6PM, and at midnight once again. Even if you accidentally forget to turn it, it is important to cover the forgotten amount in a later time.
At first, we prepared these things for disinfection – a small and clean tray to put the disinfection tools, a thin and long tong-like tool called Kelly, round cotton balls (prepare enough), gauze sheets in the width of 3x4cm (prepare enough), saline solution, alcohol, and sometimes hydrogen peroxide and Bactroban ointment.
The part where the external fixator touches the skin is the major area for disinfection. I wetted the gauze sheets with saline solution and cleaned the operated areas and other calf areas. We cleaned the areas just to get ready for disinfection. When we wiped that part, Chang-Wook knew that disinfection had started.
We had poured alcohol into the cotton ball container earlier, and took out a cotton ball each time and squeezed it over the wounds first to avoid excessive alcohol absorption in the wounded areas. Then we used Kelly to clean the wound and my wife did it very meticulously. At times, we observed a small amount of blood or pus, or sometimes scabs. When there was scab, we dissolved that part with hydrogen peroxide and wiped it cleanly.
Of course Chang-Wook was suffering from pain but that didn’t stop my wife from what she was doing. We thought it was helpful when someone fanned on the side. We stopped blowing into the wound with mouth after judging that it could cause germs to get on the wound. Instead, we used a plastic or a paper fan. Months of continuous disinfection caused him stress and the skin to get irritated. Bactroban ointment was useful when he had little goosebumps.
After his discharge, we went to the outpatient clinic every 2 weeks for about 2~3 months. The professor told us that he had a relatively satisfactory condition. He exercised at the sports medicine clinic every time he went to the outpatient clinic, which I think it is important to have a regular and timely exercising and stretching schedule, since it is very important to lengthen the tendon as long as the bone. It was also a process Chang-Wookdisliked after disinfection.
Around the time he was going to get rid of the external fixator, he had had a relatively flexible ankle and knee and was able to stand on his own. I wished he could exercise walking with crutches since the very beginning, but it wasn’t something that could be forced. He is still walking and stretching steadily and regularly, in the hopes of not having to go through the equinus deformity surgery.
There were parents who suggested feeding him food with lots of collagen, but we gave him the food that he liked and just tried to increase consumption of dairy products. These days, he has been having small coughs and frequent colds these days, I think it is because of too much energy consumption during the rehabilitation sessions, more than because of the change of seasons.
But I wish I could have let him get more sunlight. This year he didn’t get to go out much other than the time he went to the summer camp in Busan area. I hope next year we can get a chance to go to the beach with his to straightened legs after we get those his robot machine removed.
The bone haven’t even solidified yet, but now he is familiar with the robot legs now and often boasts about his longer legs after he finds out during outpatient. I am so proud of him and hope his self-confidence grows as much as height. The Ilizarov surgery is done at the hospital, but the patient’s post-surgical well-being and successful rehabilitation therapies are all up to the family’s will and determination.