Chao News Client Trainee Reporter Wu Fumei Reporter Xiao Nuannuan Correspondent Zhu Yao Ling
"When they have the identity of mothers, in the face of this long gamble of life and death, reason can never win over the emotional side, and all persistence and waiting are just instinct. Even if they are facing a hurricane that can devastate an entire family. ”
The thick walls could not stop the cold dripping sound of the machine, and could not catch the heart sinking an inch every second, mixed with the sound of the rapid footsteps of the medical staff and the rolling of the wheels of the hospital bed, and the picture of the child's body covered with tubes seemed to be right in front of him.
Every time the hidden door opened, or the moment the phone rang, their hearts leaked half a beat along with the five big words "intensive care unit......
Medical equipment that is always available at the patient's home. Provided by the interviewee
At first, they thought it was just a common cold, a convulsion caused by a high fever, a moment of paleness, and malnutrition caused by anorexia, but when the red medical indicators finally pointed to severe heart failure, rare epilepsy, congenital heart disease and neuroblastoma on the case diagnosis, their hearts began to change, from delicate to tenacious.
Originally, it seemed like a hurricane that would crush her and their family, swept through the terrification, numbness, and despair, and howled like a raging wind. After a long and difficult journey to seek medical treatment, if you want to ask, what has kept them going until now?
One syllable that can dominate all answers: Mom.
There was a moment of anxiety outside the ICU
On December 26, 2023, 52-year-old Da Qinghua spent the longest 5 hours and 20 minutes of her life. On this day, her 15-year-old son, Lele, underwent artificial heart surgery at the Children's Hospital of Zhejiang University School of Medicine (Zhejiang University Children's Hospital).
Since November 2022, Lele has experienced symptoms such as cold, loss of appetite, and swelling all over his body. In January 2023, he was admitted to the ICU with severe heart failure, and 14 indicators showed abnormalities. After repeated struggles and struggles, the family finally decided to install an artificial heart for Lele to maintain blood circulation throughout his body.
Since 9:10 a.m., Lele was pushed into the operating room, Da Qinghua did not eat or drink and stayed outside the door, no matter how much her husband, daughter and son-in-law persuaded her. She hugged the down jacket with her son's residual warmth, sat on the floor at the entrance of the ICU, pillowed the slippers that Lele took off before entering the operating room, and held a string of Buddhist beads in her palm, and kept silently reciting the blessing of the Bodhisattva.
"Whenever mom sits at the door waiting for you, I will hold you tightly." Da Qinghua has always maintained this posture. Despite this, as time passed, the residual temperature of the down jacket on her chest was still cooling uncontrollably, just like the direction of Lele's life that she couldn't grasp.
The operation was originally planned to last seven or eight hours, but at around two o'clock in the afternoon, the voice of Lele's family suddenly sounded on the radio. At that moment, the string in Da Qinghua's heart was on the verge of breaking - the operation failed and ended early? She didn't dare to think about it.
Her brain went blank, and she walked in a daze, until she saw the doctor's mouth open and shut and swallow out the words "the operation was very successful".
Suddenly, the big stone that pressed on Da Qinghua's heart fell to the ground with a bang, and she bowed deeply to several doctors, and at the same time, various complex emotions such as panic, fear, and panic swept in after realizing it.
Separated by a door, life and death in an instant. This kind of panic and powerlessness that goes deep into the bone marrow, 34-year-old Li Haiping has also felt it firsthand. Her nightmare began during the Spring Festival in 2019. At the Chinese New Year's Eve dinner, Senbao's sudden convulsions for more than 3 months disrupted the peaceful life of Li Haiping's family. From thinking it was an ordinary febrile seizure, to having more and more frequent seizures, after tossing for more than half a year, Senbao was finally diagnosed with Dravet syndrome (severe myoclonic epilepsy in infants).
To Li Haiping's despair, this is a rare highly refractory epilepsy syndrome, which is ranked No. 105 in the first batch of rare diseases in the country, with an incidence of about 1/15700~1/40900. At present, there is no effective treatment, and only specific drugs such as clobazam can be used to relieve symptoms.
Recalling the situation when Senbao entered the ICU for the first time in 2020, Li Haiping clearly remembers that in the 24 hours round after round, she didn't dare to close her eyes for a second. Sambo has been in a coma. In the past seven days, she has been squatting at the door of the ICU, sitting on the floor and waiting at night.
As soon as the door of the ICU is opened, Li Haiping's heart will hang. As soon as the mobile phone rang, the whole person had to shake violently, for fear of bad news, "I didn't dare to leave for a moment, I didn't know what I could do, but only sitting there was the closest place to Senbao." ”
Da Qinghua personally made a backpack for Lele. Provided by the interviewee
One door and one chair, figurative silent waiting
For 40-year-old An Lan, the ICU is not only a moment of anxiety, but also a long wait and silent waiting for more than 160 days and more than 3,840 hours.
Her 14-year-old daughter, Xiaofan, is a patient with congenital heart disease. Since he was more than 3 years old, before coming to the Children's Hospital of Zhejiang University in September 2023, Xiaofan had undergone 3 surgeries in other hospitals, "The operation is very risky, and the doctors deliberated and discussed for more than a month before deciding on the plan." ”
On October 25, 2023, after the operation, Xiaofan was pushed into the ICU, and he has not left this place for nearly half a year since then. And from her, An Lan has also guarded her for more than 160 days.
"There's a chair on the 4th floor, and I'll sleep there." It was a chair in the waiting area outside the ICU door, and there were no armrests in the middle of the last row, barely enough to lie down an adult. One of the chairs was a little damaged, the height was not flush with the rest, and it was easy to lie down and get your back and waist slumped.
said she was sleeping, but in fact she couldn't sleep at all, "Every day I open and close my eyes is thinking about her operation, and I will squint when I am really sleepy." ”
When it's cold, Anlan adds two more quilts. As soon as the morning dawned, they were packed up and placed in the corner with the luggage with the simple clothes. An Lan said that it is closer to Xiaofan, and there is no need to spend money to rent a house, so you can save a little.
Waiting and waiting, An Lan also became a familiar face in the eyes of doctors, nurses and other parents. "Xiaofan's mother doesn't talk much, she stays outside quietly every day, and sometimes when we look at her sallow face, we feel very uncomfortable." Tang Xiaomin, head nurse of cardiac surgery, said.
Luggage that is stowed into a corner. Photo by Chao News trainee reporter Wu Fumei
From the need for ECMO just after surgery, to being able to eat some liquid food; From autumn to winter, and then to the spring of the following year, last month, Xiaofan was finally transferred to the general ward. Despite this, An Lan's waiting has not stopped, since Xiaofan was diagnosed with congenital heart disease, her life is almost only left with the company and protection of Xiaofan.
On the 9th floor of the children's hospital of Zhejiang University, the beds next to each other, the sideways passages, the crying children, and the parents who pat their backs to comfort them...... Xiaofan's current ward is here. Her hospital bed was by the window, and by the window was a bottle of hot sauce, a drink, a knitted bouquet of flowers, and a couple of pill boxes. They are from Guizhou, and they all love spicy food. The knitted bouquet is used by familiar nurses to please Xiaofan.
Xiao Fan sat on the bed with his knees crossed, lowered his head and watched the short video on his mobile phone, curled up in the shadow of the curtain to do fogging. At the age of 14, she is less than 1.5 meters tall and weighs less than 44 pounds, and when she approaches, she can see clear blood vessels and bulging bones under her skin.
"Now I have to call her to take medicine regularly, record her urine and bowel movements, and sometimes take her around the floor of the ward with a small cart." An Lan said that she can't take Xiaofan downstairs yet, because "there are many people downstairs, there are many viruses, and her immunity is not enough."
An Lan is like an NPC waiting by Xiaofan's side, sitting quietly on the small plastic stool given to her by the parents who have been discharged from the hospital every day, silently observing what the child needs, waiting for the child to talk to her and "release the task".
Accompanying and waiting seems to have been Anlan's lifelong mission. The few square meters of the ward as far as the eye can see is her whole world, and the child is the only light.
The same is true for 38-year-old Yu Hongqiong.
Since 2018, when their daughter Xiaomeng, who is less than one year old, was diagnosed with neuroblastoma, they have traveled to Beijing, Hubei, Zhejiang and other places to seek medical treatment, performed seven high-risk surgeries, and entered the ICU four times. The signature on each off-site risk filing form is proof that she has been with her all the way.
The windowsill next to Xiaofan's bed. Photo by Chao News trainee reporter Wu Fumei
The power of a "mommy".
In the long-distance running day after day, these mothers may no longer be as anxious and panicked as they were when they were first diagnosed, pressing the undercurrent in their hearts, holding their children's hands and moving forward cautiously and unchangeably in the rolling wheels of life.
From 2018 to 2019, when Yu Hongqiong took her daughter Xiaomeng to seek medical treatment in Beijing, she was uneasy, suffocating and depressed.
To save money, they live in a dilapidated old house in Beijing's Second Ring Xicheng District. It was a cramped, windowless semi-basement with no windows on all sides, small enough to fit a bed, a cooking table, and a chair. Even so, the rent for a month is five or six thousand.
Due to the shortage of hospital beds, Xiao Meng was discharged from the hospital more than a week after surgery, and the mother and daughter lived together in this semi-basement. Every morning, Yu Hongqiong took her to the hospital for a re-examination on bus No. 3 or No. 19, which took about ten minutes.
One night at nine o'clock, she was taking her child back from the hospital for a check-up, and when she got off the bus, the conductor on the bus suddenly said "Happy Mid-Autumn Festival" to her, "I burst into tears all of a sudden, I haven't had a holiday for a long time, and I don't know what day is a special day." ”
When she was at a loss to shuttle through the streets of an unfamiliar city and tiredly ran around the hospital, a stranger she had never met before at night, and a casual "Happy Mid-Autumn Festival" seemed to dispel all her sadness and helplessness.
Hurricanes are not instantaneous, but the process of diagnosis and treatment is a mixture of hope and despair. Behind the seemingly invincible, every hesitation and vulnerability is real.
In 2020, Li Haiping's family has spent all their savings in order to see a doctor for Senbao, and they are in debt everywhere and are in a desperate situation, "I spent more than 100,000 yuan a month, and I don't know how to live my life." On the day she came out of the ICU, she even walked by the river with her child in her arms, saying, "Senbao, or your mother will jump off with you." ”
"I don't know if the child understands, hugging my neck and calling Mom." At that moment, Li Haiping's eyes were filled with fog, and she instantly gave up the idea of suicide and had the strength to hold on again.
Although Senbao still needs to be taken care of 24 hours a day, the daily expenses are not small, basically accounting for 80% of the family's expenses, "I have to take four medicines a day, and the medicine alone will cost about 400, not counting the costs of tranquilizers and other expenses required during attacks." However, Li Haiping's family is still insisting. For her, in addition to the support given to her by her children, the patient group is also a source of strength for her to persevere. There are 5 groups of patients with the same disease as Senbao, with a total of more than 3,000 people, "We talk about everything in the group, and sometimes we can talk thousands of messages in an hour." ”
When a child leaves, the atmosphere in the group will also fall into tension, but most of the time, everyone comforts each other, supports each other, and carries out spiritual "mutual rescue", "Today you comfort me, tomorrow may be me to relieve you." ”
Photo by Chao News reporter Xiao Nuannuan
"Superman in Armor"
Love turns fragility into armor, so that every mother can do anything. The bravery and cowardice of human nature constitute the beginning and end of life, and it is at the critical juncture at the center of the hurricane that the strongest, most resilient and gentlest part of a mother's heart is revealed. In each episode of life, they gradually become strong and omnipotent, resisting all the storms for their children.
Li Haiping, who saw Senbao's convulsions for the first time, was panicked and at a loss, and now, Zhuji's home is "like a small intensive care unit", full of Senbao's medicines and treatment equipment, and all the first-aid drugs he can think of are ready.
Once Senbao becomes ill, she can skillfully operate diazepam suppositories, oxygen machines, sputum suction machines and other instruments as quickly as possible. "If you have a seizure, give him oxygen first, then the tranquilizer will go up, and if there is phlegm in the throat, suck the phlegm."
She once knew nothing about this rare disease, but now she has become a half-expert, and she has bought one medical book after another at home, carefully turning over each page and taking notes in the key parts, and the browsing records of her mobile phone are also relevant.
Unlike other children, Lele must rely on an artificial heart to live a normal life after surgery, and needs to carry 2 batteries that can last 16 hours every day to go out. For him, the amount of battery in the artificial heart is his lifeline.
There are two original battery packs for the heart battery, which are very bulky, and Lele will feel tired just by carrying them. After the postoperative review, Da Qinghua stayed up all night to make a fluffy battery pack for Lele, "so that he will not be very heavy on his back, and it will be a little warmer." When the weather got hot, she made a thin version of the battery pack out of jeans.
On the morning of March 1 this year, Da Qinghua sent Lele, who had recovered well after surgery, back to campus. Although she felt distressed to watch her son struggle to climb the stairs, she knew that this was the only way for Lele to return to a normal life. However, she didn't know at the time what a thrilling seven minutes she would experience a few hours later.
In the afternoon of the same day, Lele suddenly called her. "He said, Mom, there is only one bar left in my (artificial heart) battery, and the alarm is flashing!"
Da Qinghua's heart panicked instantly, realizing that the battery in the morning may not be fully charged, and once the artificial heart is out of power, it means that the child will die. At that moment, the power of the battery was a countdown to a time bomb in her eyes. Even though the hand holding the mobile phone was trembling, she still pretended to be calm and tried to comfort Lele with the calmest voice, "Don't be afraid, mom will definitely be at school within 8 minutes, don't worry, it's absolutely no problem!" ”
There was a tsunami in her heart, but she could only use the most reassuring voice to transmit her son's strength, and then go to school as fast as possible. That afternoon, she rode a battery car, which usually takes sixteen or seventeen minutes to travel, but Da Qinghua was stunned and shortened to more than 7 minutes, "There is no way to live and die." ”
So, 8 minutes after making the call, Lele in the security room met his mother who "fell from the sky".
Photo by Chao News reporter Xiao Nuannuan
Wishlist
For these children, every abnormal number of indicators can turn upside down their hard-won peaceful lives. For these mothers, all kinds of festivals are luxurious, and they are more meaningful than festivals, perhaps because of the weak positive trend in the pathological diagnosis book.
On Children's Day, you may not see balloons, toys and cakes. Senbao, who is five and a half years old this year, spends every year on Children's Day with Li Haiping in the hospital ward.
The Mid-Autumn Festival does not necessarily mean reunion and happiness. When several nights fell and thousands of families were reunited, Yu Hongqiong and Xiaomeng were on the way to seek medical treatment in other places.
Spring Festival may not be able to have a family meal on Chinese New Year's Eve. Xiaofan is in the ICU, An Lan is outside the ICU, her husband is in a rented house where she works in Shaoxing, and the other two children are in their hometown in Guizhou.
In their world, happiness seems to be clearly priced, indiscriminate illness robs them of their once bright hopes and aspirations, and terrible illness also consumes their accurate perception of time. Maybe it's because, in their eyes, there are more important things to measure life and weigh happiness.
This Mother's Day, they have the same wish list -
"Maybe one day a better medicine will suddenly come out." Li Haiping planned to take Senbao out to see the outside world when his illness was completely cured. On the side, her son was holding the spoon in her hand and motioned for her to eat the first bite of watermelon.
"I hope that my children can live peacefully for another 10 or 20 years." Da Qinghua is looking forward to the day when Lele can unload the bag with the battery on his back with peace of mind, play football, basketball, swim, play drums as before, and run under the playground in the bright sunshine.
"I hope all three of my children are healthy and healthy." Xiao Fan pinned the green hairpin sent by the nurse's sister on his head, and was looking at his mobile phone to figure out what to order at noon today. An Lan, who was beside her, looked at the pictures her daughter drew for herself and felt extremely satisfied.
Yu Hongqiong said that Xiaomeng loves to play puzzles, likes Barbie, and always wants to wear beautiful dresses. "In fact, people like us who have walked the road hope that their children are healthy, and a plain family is the best." As she spoke, she stood up from the library corner in the corridor of the classroom, stepped on the bell of the end of class to guard Xiaomeng, and watched her play with her classmates.
Now she accompanies Xiaomeng to class every day. Although I was waiting, the mood at this time was completely different from when I was outside the ICU.
In front of the slim chance of recovery, they don't want to be the kind of mothers who sit back and wait for death. In the center of the hurricane, they did not cry hysterically, but just buried their heads forward, because only by becoming strong enough to carry their children across the swamp and the ocean.
(Xiaomeng, Lele, Senbao, and Xiaofan are pseudonyms in the article)
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