Father's Love
On Thanksgiving Day of 2018, Dr. Liang received a very special and Dharma-filled gift, a letter of thanks from the patient's father. It also reminded him of the time more than four years ago when Dr. Liang went to Harvard Children's Hospital in Boston to rescue a nine-year-old girl who had a stroke. The following is the general content of the letter from Dr. Zhu Xiaotian, the girl's father.
After graduating from college in 1988, I came to the U.S. for my PhD, postdoctoral studies, and then work. The journey has been pretty smooth in general. My two daughters grew up slowly, I went to work and left work every day, and for a while I felt that such a life seemed monotonous and thought about how to live a different life. I was surprised when I was caught off guard by an incident that nearly killed my youngest daughter and ruined our family. Since then, it has been a different life. Here are the contents of my diary from that time.
10/6/2014
At about 3 pm, an emergency call was received from our department secretary to inform me that my nine-year-old daughter, Anne, had an accident at school and was taken to the hospital emergency room. So I dropped everything and hurried over to the hospital. rushing into the emergency room, I saw my little daughter Anne lying on the bed as if she was asleep. The doctor said that a CT scan had been performed for her brain, which was bleeding in the back of her head, and she needed to be immediately transferred to Boston Children's Hospital for brain surgery. I didn't have much time to think about it, so I boarded with the ambulance staff and came to Boston Children's Hospital around 4pm. In the emergency room of Children's Hospital, there were already many doctors and nurses waiting. Physician Kris Khale , patiently answered many of questions from me and my wife. He then went into the surgery room with Ed Smith a world-renowned brain surgeon to perform brain surgery on Anne. At the meantime, a social worker took us to the waiting room on the seventh floor outside the neurosurgery ICU units. During the period from 5:30 to 8:30 , my wife and waited anxiously. I went to the bathroom many times myself, prayed to God kneeling, and wept bitterly. Dr. Khale came to find us around nine o'clock in the evening and told us that the operation was successfully completed. At about ten o'clock, Anne was pushed out, with a pipe in her head and a thick bandage around her head. Anne’s mom accompanied Anne in the ICU ward that night while I went home.
10/7/2014
The doctor decided today to do Angiogram on Anne so the general anesthetics was not withdrawn. Anne did not wake up. We waited on the second floor of the hospital for the procedure. After it was finished, Dr. Orback took us to a small room and said that he did not see any problems with the blood vessels. Anne's vascular arteries were indeed very thin on the right and were not evenly distributed. But that should not be the source of the internal bleeding.
10/8/2014
The doctor went on a CT brain scan today and found no bleeding site. Finally the doctors decided that they could withdraw the general anesthesia.
In the morning, the tube inserted in the brain was also removed, because there was no more cranial fluid drawn out.
10/9/2014
Anne finally woke up in the morning, but did not respond to us. Nor did she respond to her favorite toys. Dr. Khale visited the room in the morning and said that it is important to increase nutrition for brain recovery. Then came a lot of hematology doctors, and said that when removing the cranial canal, CT scan showed a lot of bleeding, and wanted to find out if there was a problem with blood coagulation factors.
10/10/2014
I tried to communicate with Anne in the morning. She actually reacted this time, which made me very happy, indicating that she was still awake. Anne’s mom also said that church friends had come to seen Anne, and she had some eye contact with them. My older daughter Angie came to see Anne, and they also had communication. Anne couldn't speak, so Angie took out the iPad and held it in front of Anne. Anne even remembered the iPad password and opened the iPad . It was a very inspiring moment. Later, Dr. Khale came to the rounds again, and was unhappy that the nutrient solution had not been added. So the nurse inserted an gastric tube into An Hui and began to pump in Pedisure brand formula.
10/11/2014
Today, a nutritionist came to ask Anne if she wanted to eat some fruit jams. Anne nodded yes. They fed her first and then ask her to eat it by herself. Anne could not grab the spoon, and unable eat on her own. People from the physical rehabilitation department also came and asked Anne to do some training. They asked her to sit up in a chair but it was very difficult for her! Our good friend Professor Ma’s family came to see her and saw that Anne couldn't even do this. Their whole family cried. In the afternoon, the doctor transferred Anne from the ICU ward to the neurosurgery building floor.
10/12/2014
Anne suddenly fell into a deep sleep state. In the morning, Dr. Khale and many neurologists came to see her and repeatedly called her name. Anne opened her eyes, looked at them, and went back to sleep. At three or four in the afternoon, Dr. Khale came again, and when he saw Anne, he said something was wrong, and immediately sent her for a brain CT scan. Afterwards, Dr. Khale repeatedly called Anne, saying "Anne , I'm Dr. Khale , I don't need anything but you get better " . But no matter what she was called, Anne still didn't respond. A CT scan was performed, and the results showed that there was no problem with the surgical site and the brain did not bleed anymore, but somehow, Anne couldn't. We told Dr. Khale that the only difference in the past few days was the addition of a formula nutrient solution, did Anne react to it? Dr. Khale said he didn’t think so, but he ordered nurses to stop the infusion for now.
At this time, I rushed to call Dr. Liang in Los Angeles, and he asked me to cut a little bit of Anne’s hair and take pictures of her eyes and nutrient solution before passing it to him. A few minutes later, Dr. Liang called back and said that Anne's eyes, hair, and nutrient solution contained information about the virus, and that the virus was the most feared at the time. As soon as I heard Dr. Liang's words, I knew the lethality of the virus, I immediately petitioned Dr. Liang to come to Boston in person. Knowing he has many patients waiting for their appointments, I asked Dr. Liang if it is OK for him to tell other patients that he needs to go to Boston to save a patient’s life! Dr. Liang prepared a little and drove to the Los Angeles airport, and caught up with the last flight to Boston. Meanwhile in Boston, after stopping the nutrient solution, Anne quickly waked up. Thanks to Dr. Liang's diagnosis, we were more certain that this nutrient solution could be no longer used.
10/13/2014
At 5:10 in the morning, I went to the airport to pick up Dr. Liang, and then went directly to the neurological ward of Boston children's hospital. Seeing several doctors already in the Anne’s ward, discussing whether to use seizure medicine , Dr. Liang immediately tested Anne’s samples and said there was no seizure , so we told the doctor at the hospital that we did not agree with them to use this medicine. At last the doctors compromised and asked to gave Anne a 24- hour brainwave monitoring. Dr. Liang started treatment in a small conference room on the ninth floor of the hospital, first removing the major and lethal virus. In the second priority of treatment, he saw six or seven viruses in Anne’s stomach. After getting rid of them one by one, he went to my home and rested at noon. Dr. Liang and I went back to the hospital in the afternoon, and then treated her for several rounds, including depression. Because Anne's condition was uncertain, the doctors decided to transfer her back to the ICU ward.
After returning to IUC , a nurse suggested to give An Hui a hair wash with shampoo, and Dr. Liang agreed. When shampooing, Anne’s mood became volatile, Dr Liang immediately go to the ward, treating Anne remotely , she was quieted a lot and let the nurse and helper to finish washing her head. Back home in the evening, Dr. Liang treated me and Anne’s sister. Before going home, Dr. Liang also helped Anne’s mom for treatment. After 12 o'clock in the evening, Anne’s mom called and said that Anne was extremely disturbed and felt a nervous attack. Just me and Dr Leung ready to go to the hospital, my wife said the nurse has given Anne medicines which had stabled her down and put her to sleep.
10/14/2014
Dr. Liang and I came to the hospital in the morning, watching Anne still sleeping. We discussed together to see what kind of nutrient solution to change, and finally decided to go for Pedia peptide . Dr. Liang said that only sugar removal is required. Dr. Liang was taken to the airport at 2 pm by my friend Qiu Fuma.
10/15/2014
Anne’s body is extremely weak, nevertheless, doctors have begun to ask her to do some physical therapy. Due to no bawl movement for a few days, the doctor added Miralax , but Anne began to fall into a drowsy state again. I quickly took the picture and passed it to Dr. Liang and found that Miralax was contaminated with virus. We immediately told the doctor that Anne was allergic to this medicine, so she did not add it again. After that, Anne no longer went into the drowsy and sleeping state.
10/16- 23/2014
Next to Anne’s hospital bed, I played music, looked at photos, and played thumb game with her. Basically, Anne won me powerfully every time. It was the happiest moment I've had since the accident, and one of the few rare moments of joy in my life. Nurse Brita is very good to Anne, but she is very demanding, even though Anne doesn't want to do physical training, Brita doesn't give in at all.
My wife stayed with Anne 24 hours a day at the hospital for two weeks and then started going back to work and coming over at night. I started to stay with Anne 24 hours a day and night. She couldn't speak, so Rachel from the hospital's communication team made some alphabet keyboards and pointed to the letters when Anne wanted something, and we spelled out the words. Her sister, Angie, whose school is near the hospital, came to see Anne after school every day and stayed with us for a while before going home. Sometimes when Anne saw or heard Angie and I eating, she would open her mouth and say she wanted to eat. Since she could only eat a little bit of liquid, we couldn't give it to her, but sometimes I would feed her a small bite of bagel or croissant.
10/ 24/2014
Today is the last day at the Boston Children's Hospital and we will be transferred to Spaulding, a rehabilitation hospital, in the afternoon. The nurses at the hospital are very dedicated. They were very patient and dedicated to Anne even when she was at her most unstable. Anne seems impatient most of the time, but the nurses are still very, very nice!
In the morning Anne started to make a little sound and she could talk! She said two words, " No Spaulding"! It may be because Anne was very uncomfortable with the pain when she did physical therapy. Nurse Brita told Anne that after going to Spaulding, she would have to do physical therapy for three hours a day, so Anne felt that she could not go there and held back two words in a hurry. For whatever reason, it was nice to hear Anne talk!
In the afternoon, we were transferred to Spaulding by ambulance. It is located at Charlestown, which, like Boston Children's Hospital, is also a teaching hospital of Harvard University. Two rivers surround the modern hospital building, which is very stylish and comfortable. When we arrived at the rehab center, Ann, the vocational trainer, came to the room and helped us get settled in.
10/25/2014
Anne started her rehab today. She was in a wheelchair and I pushed her to Ann's room. At the table, Ann asked her to write her name. Anne slowly wrote ZHU, but the three letters were skewed and squeezed together. Ann asked her to throw some small balls from the table into a bucket at the table, but she only got one or two balls in, which was heartbreaking!
Anne often vomited because she had to be fed through a gastric tube. Lynnete, the language trainer, came to help Anne learn to vocalize and test her ability to drink, saying that she was not yet able to drink on her own. The formula was being fed through a stomach tube, and because of this, An Hui kept drooling and kept asking us to help her with a straw. Because of her dizziness, Anne did not want to sit up and just lay down. Even when she was in her wheelchair, Anne was dizzy.
10/27/2014
Anne threw up her gastric tube because she was vomiting, and she was determined not to put it back in herself. We consulted Dr. Liang, who thought that Anne's swallowing nerves were fine, so there was no need for a gastric tube, and asked us to stall with her doctor. Dr. Liang wants to see how Anne would do in the next two days. To make sure she drinks enough water, we try to give her rice porridge cooked by her aunt, yogurt and orange juice. The doctor wanted to check the concentration of urine, and if that didn't work, a gastric tube had to be inserted. I had to add some water to her urine because we knew at first that she wasn't drinking enough liquid and didn't want to put in a gastric tube.
10/28-30/2014
Anne had a reaction when she ate the food at the rehabilitation center. Dr. Liang checked and told us there was contamination, so most of the food had to be decontaminated. Mrs. Zhang made buns and brought them to the hospital so Anne could eat them. Auntie at home made broth, which also helped a lot.
Speech training has enabled Anne to whisper, albeit in a high-pitched voice. Physical training is also helping her regain her body muscles. The eyes are blindfolded in one pair, as Anne sees things in double vision.
10/302014
Today is Halloween. The kids in the children's area of the rehab center, all wheeled by their parents, went from the 7th floor to the 2nd floor, one office at a time, asking for candy or gifts. It was a humbling experience, originally seeing people in wheelchairs made me a little scared. Today I pushed my own daughter and it has changed my outlook on life and values a lot since then. The staff on each floor were kind and gave lots of things. Back to the room, Anne ate a piece of KitKat candy and threw up again. Dr. Liang said the candy was contaminated.
11/1 - 9/2014
Anne is slowly getting better. I stayed with An Hui every day, and Anne's mother came over in the afternoon, or early in the morning, to bring her aunt's cooking. There are a lot of volunteers at Spaulding, which is very touching. The main problem now is dizziness, and she can't do rehab if she’s dizzy. And there is no bowel movement, so I have to put medicine by the anus.
11/ 10 - 16/2014
During this period, Dr. Liang made another special trip to treat Anne's problems with double vision and dizziness in her eyes.
11/17 - 27/2014
Anne's problem with dizziness at the rehab center is slowly getting much better with remote treatment from Dr. Liang and the center's doctors, and she can stand up and walk a bit with me pushing the wheelchair behind her. the therapists at Spaulding are very nice, experienced and patient. The occupational therapist is Ann, the physical therapist is Marianna, and the speech therapist is Lynnette.
Every Friday night, Angie takes the subway from school to Spaulding by herself and we sit together as a family in the lobby on the seventh floor for dinner. Even though we are in the hospital, we are very content and grateful to have a meal together as a family!
Every morning I get up and feed Anne breakfast first, then she goes to physical therapy and I eat breakfast. Because I get cramps in my feet when I stay indoors for long periods of time, I take the time to go outside the hospital to get some sunshine and fresh air while Anne is in therapy. Such a normally and ordinary thing, but now I realize how precious it is!
While at Spaulding, Ms D, the class teacher of An Hui’s primary school, visit numerous times. The principal, Mr. Chitty, came twice. The school nurse Manndy, classmates and parents all came. All 4th grade students sang a song to Anne on Youtube called "Lean on Me”. There were also brothers and sisters from the church, children's group pastors, church volunteers, Little Bear, Qiu Fu, Qing Fei, Sunny, Dr. Zhang and Mrs. Zhang, Tom Tam and his daughter, and other relatives from China, who prayed continuously. The warmth and affection were so profoundly moving that it is hard to describe...
Finally, a few days before Thanksgiving 2014, the doctor at the rehab center informed us that Anne was recovered enough to be discharged from the hospital. We took a half day to bring Anne home to see if she was comfortable. The sun was shining when we brought Anne home that day. At around 11:00 a.m., Anne got out of the car and pushed the walker slowly toward the door of our house. The green grass in front of the house was covered with red and off-white maple leaves, and we took a picture of her with our camera, still full of joy after everything happened. We send her pictures to my sister in Vancouver Island and my mom and dad in mainland China. My sister even asked: “Is that a picture of Anne after her surgery? You can't really tell after such a major surgery!” We only went home for a few hours that day. The day before Thanksgiving, with a wheelchair and walker, Anne came home completely. The day we came home was another gorgeous day! I took Anne and she pushed the walker and took a long walk around Peirce Elementary School. Our neighbor, Lynn, was especially happy to see us and walked with us.
12/1 -14, 2014
Back home, Anne and I stayed in the TV room on the first floor, and it was easier for Anne to go to the bathroom at night. Every night before going to bed, I would kneel in front of the bed and pray to God!
From Dr. Liang Zhijun: "The Great Way is invisible and gives birth to heaven and earth. The Great Tao is without emotion, running the sun and moon. The great Tao has no name, the growth of all things. I do not know its name, strong name is the Tao. Taoism is not to seek God and worship Buddha, but to learn the spirit of wisdom of humanistic cultural education; also to understand the truth of Buddhist karma. Do not afraid of religion, because it is good for health, learning upward content, believe in Buddhism is not just seeking blessing, but enlightenment; some people do not understand, do not believe in religion is sad, because cannot gain; negative religion is fearful, because go astray; positive religion is happy, because the future is bright, Dr. Zhu is a famous scientist (Chinese elite travelers in the United States) research and development of blood cancer biological agent inventor, is a major contribution to the scientific world, but also a devout Christian. At first he felt that life was too monotonous and wanted to live a different life, but he never thought it would be such a strange life! Let's encourage each other!
This is Anne dancing two months after healed!
