Pediatric dwarfism clinic
(Chung-Buk Rehabilitation Center,rehabilitation specialist)
A Meeting about Surgeries at Chungbuk Rehabilitation Center
On September 29, 2010, we had a meeting with the families of those five chosen patients, other workers, and sisters at our center. The purpose of this meeting was to educate everyone in the meeting about the limb lengthening surgery and decide if we actually wanted to proceed with the process. It was my responsibility to organize the meeting and deliver medical explanations to the attendees. For that, I made materials (x-rays pictures) that show the family members’ conditions and summarize the prospective surgery. But as a specialist in rehabilitation, I lacked knowledge in orthopedics. So I looked up the homepage of the dwarfism clinic for sources related to the surgeries and also made inquiries to the nurse at the clinic.
Those surgeries were not only somewhat foreign surgeries that our medical center had never experienced before, but also optional surgeries that were performed for the enhancement of physical movement and quality of life, and not absolute surgeries related to life. Also, because those family members (patients) had mental disability, they weren’t able to decide for their own surgeries. Instead, their guardians (parents and siblings) had to make decisions for the surgery for them. Another topic of discussion was about payment of the surgery. Moreover, we had to discuss if our facility could take care of all the post-surgical procedures and management since a group of more than 20 people had to live together. Taking these and many other things into consideration, workers at the medical center and I tried our best for this meeting. After the heated meeting for 2~3 hours, the families of those 5 patients all came to a conclusion to have the surgery. Upon the approval of the surgery by the head priest of the surgery, who was present at the meeting and listened and understood the medical aspects of the surgery, the final decision was made to have the surgery. We informed the nurse in charge, and the surgery was scheduled for some time in December.
Pre-surgical tests and examinations
During November and December of 2010, we went back and forth to Seoul for various pre-surgical tests and examinations like chest x-ray, EKG, echocardiogram, brain waves, and brain MRIs in orthopedics, pediatrics, neurology, internal medicine, ophthalmology, and hematology departments. The number of visits was relatively more than how often a regular patient would have visited, since the disability of our family members was accompanied by other diseases such as cerebral palsy, mental retardation and epilepsy. During this time, we had a lot of outpatient visits with Professor Eun, Baek-Lin, and I still appreciate him for being available and kind to all our family members despite his busy schedule. It was a great experience with no time wasted. It was the first time for some of our family members getting MRIs of their brain. They hadn’t had a chance to get their MRIs taken until then. Through the examinations done before the surgery, we were able to exactly locate the cerebral lesions and I, as their rehabilitative physician, was able to understand their conditions in more details. As a matter of fact, a tumor was found in the pituitary gland on the MRI of one of the patients, so she had to put off her orthopedic surgery till later. I was happy to hear that all the tests in hematology and endocrinology, 24-hour urine test came out normal. They also didn’t need any further internal medicine or neurological tests. As for the girl who had a tumor in the pituitary gland, we are going to consider limb lengthening when she gets a chance.
Financial support for caregiving
Finally in mid-December of 2010, the 4 patients (JeonHye-Ji, Lee Yoo-Bin, Lim Soo-Jeong, Kim Sang-Il) were admitted to the hospital. On the day of admission, one caregiver was assigned for each patient. Overall, the caregivers took care of the patients very well. We were relieved thanks to them and had to go to Seoul to visit the patients only once or twice the entire time. I can’t express enough how grateful we were to have received financial support during hospitalization, even for caregiving. The expense for caregiving would have been a lot, given that we had 4 patients. I would like to take this chance and ask for your continuous support.
Admission and surgery
On the day of admission, the patients were handed over to the caregivers as they changed their clothes to the hospital gowns. One of the patients, Soo-Jung must have noticed something because she started throwing tantrums, sitting on the floor and not wanting to move. It was a bit heartbreaking that even a little child could be sensitive enough to notice the nerves. It took us to take her around the hospital and buy her a snack at the convenience store until she finally calmed down and agreed to change to the hospital gown. Soo-Jung was also a girl who liked snacks.
Hye-Ji, who talked to only people who were close to her because of mutism, shed her tears when a teacher from our center went to see her 3 days after the surgery. She must have missed the teachers a lot, who were almost like her parents. Both the teacher and I felt touched.
On the other hand, Sang-Il, who had never been a problem normally, started screaming and throwing tantrums as time passed. He has mental retardation and is unable to make verbal expressions usually. He must have felt too anxious and irritated by the new environment he had to be in. His condition kept getting worse that one the day of surgery, one of the teachers had to get on his bed and restrain him. We were worried about his behaviors after the surgery, since he was going to have the Ilizarov device on. Thankfully, he changed 180 degrees after the surgery and became gentle. He must have sensed that the painful surgical procedure had come to an end. During his hospitalization, he was once had urinary tract infection and also had local anesthesia because of the Ilizarov device. He also had the biggest surgery out of all 4 patients with the longest hospitalization period and his caregiver went through a lot of hard times looking after him.
The only adult patient, Yoo-Bin, looked happy all throughout the hospitalization period despite her inability to communicate due to severe mental retardation. We even jokingly said that he must have liked staying at the hospital more than at our medical center.
I would like to give my thanks to Professor Song, other orthopedic doctors for taking good care of our family members all throughout their hospitalization.
“Self-support” room after discharge
In late-December 2010, all 4 patients were discharged from the hospital. At our medical center, we turned a room that was used as a classroom to educate “self-support” into a ward to manage the patients in that room. Placing several hospital beds that we rented from nearby hospitals alone made the room look like a hospital ward. We felt secure because we also had a long-term volunteer come and helped us out every day. Our family members were happy to be back at home, and even happier that they got to own their own bed and space. They also liked the fact that the teachers, church sisters, and everyone at the center were paying more attention to them. Hye-Ji, who used to suffer from mutism for a long time, became brighter and began to speak more than before.
I actually heard her talking for the first time after the surgery. She was usually into folding origami on her bed. No one brought her origami papers, but she cut sheets from the newspaper or the magazine and folded cranes and other things continuously. At those moments, I thought her patience and concentration level were better that mine. Observing the changes, made me understand the power of attention and love once again. It is true that it was difficult to pay special individual attention to each person in a group of 20 people. This surgery became a good example of how care and love can bring about change in a person’s mental status.
Disinfection around the operated area
I became busier after their discharge from the hospital. I took a bunch of disinfection (dressing) sets and went back and forth to the “self-support” room to help the patients with disinfection. Because I had to take care of outpatient during the day, I usually visited the self-support room during the night or the evening. Whenever I stepped into the room, mischievous Soo-Jeong always pretended like she was extremely shocked. But then her face was full of smile, revealing her playfulness. Anyways, the family members had so many operated areas that it took a really long time until I was done with disinfection, not to mention how exhausting it was for the volunteers and the teachers to hold up the their legs and keep them stable all throughout disinfection. So often times, local public service employees had to help instead of female teachers.
Tel. 032-610-1111 | Fax. 032-662-4797 | Email. firstname.lastname@example.org
Addr. 91, Bucheon-ro, Bucheon-si, Gyeonggi-do, Republic of Korea ㅣ Biz License. 130-96-01190
© 2023 Bucheon Daesung Hospital Pediatric Metaplasia and dwarfism Clinic . All Rights Reserved.