The big man who came to Beijing from Shandong Province squatted in the corner of the corridor of the Children's Hospital to wipe his tears, his shoulders shaking, desperate and helpless.
This is a scene that often occurs in hospitals, especially in children's hospitals, when they learn that their children have no hope of treatment, those expectant parents will have an emotional breakdown in an instant.
Yue Nan, a Beijinger who was taking his son to the hospital, saw himself in this crying father.
(Night emergency department at a pediatric hospital in Beijing)
On June 25, 2015, his 14-day-old son, Nemo, was diagnosed with "extensive intracranial hemorrhage, severe hemophilia type A." Within two hours, Yue Nan signed 3 critical illness notices, when his son's brain tissue had been seriously damaged and in a liquid form, and at the most critical time, his son had dilated pupils...
He did not tell the lover of confinement at home the truth, worried that she could not stand it, only said that his son's cranial pressure was not normal, and he wanted to carry it himself.
When he sent his son into the ICU, Yue Nan sat alone outside the door, a huge sadness struck, he could not hold back, crouched on the ground and cried, clicking down, helpless to the extreme. The medical staff and family members who came and went in the hospital may be commonplace, and no one will take the initiative to comfort them, until the family and colleagues arrive in the afternoon, and Yue Nan has the strength to support.
Today, colleagues still clearly remember Yue Nan outside the ICU at that time, but some words to describe his grief are poor, and they can only say "we can't do it as soon as we see him, and we really can't hold on." Before That, Yue Nan was optimistic and lively, and liked to tease his colleagues when he had nothing to do.
When she was in college, Yue Nan envisioned her life of playing with her children and accompanying them to grow up, such as painting together, going to the park together, and seeing other people's babies couldn't help but look at them a few times.
(A postcard that Yue Nan likes very much, he said that he longs for the life in the picture)
The 34-year-old Yue Nan works at a well-known Internet company, and when he holds his son, who is more than five years old, he still smiles, although now his son still can't speak, doesn't react much to the outside world, and can't stand, but this is his son after all, holding his son has a heavy sense of responsibility and solidity.
It is said that thirty and standing, the older Yue Nan sometimes wonders, why is his life in his thirties so heavy?
Yue Nan initially wanted a daughter, wearing a beautiful little skirt, tied with a bow, always glued to her father, which was an irresistible happiness. This vision led him to marry at the age of 26, and in his circle of friends, he was considered to be "early marriage".
At the age of 28, my wife finally became pregnant. Yue Nan can't wait to find colleagues with children to ask how to take care of pregnant women and how to take care of children, at that time, he would observe the changes in his wife's stomach every day, listen to the fetal movements, play music to the baby in the belly, and accompany his wife to the obstetric examination every time he was excited and nervous.
In addition to learning about pregnancy and childbirth, hoarding maternal and infant products is also essential. With colleagues to japan team building, others have gone to the scenic spots to play, Yue Nan a mind to go to department stores, supermarkets to sweep goods, one by one to compare the characteristics of different brands of infant and young children's products, water cups, diapers, small spoons, bibs, etc. bought a lot of packaging back to China, single diaper is not wet have bought the amount of children for a year.
(The clothes that Yue Nan prepared for the child at that time)
Because her wife will soon give birth, considering that she will always have to hold the child in the future, it is inconvenient to take out the mobile phone, Yue Nan also bought a watch for her wife, so that she can see the time as soon as she raises her arm.
Filled with the happiness of the soon-to-be father, Yue Nan often sent photos of hoarded infant and toddler supplies to the circle of friends, sometimes a bed full of baby clothes, sometimes piled up canned milk powder, and even colleagues were infected by his happiness, saying that Yue Nan was a "child slave" in the future.
A day after the due date, the child has not moved, the hospital began to induce labor injections, the wife had proposed to have a caesarean section, but the hospital insisted on letting herself have a baby for the sake of the "normal delivery rate".
The wife's uterine opening ten fingers or can not be born, Yue Nan remembered, the situation was very dangerous at that time, he signed a total of two words outside the delivery room, the doctor said that there was more blood loss, and finally put on the birth forceps, only to "drag out" the son.
Yue Nan, who was fidgeting outside the delivery room, even made the worst plan, in case of an emergency, he would definitely protect the adult.
"In the past few years, I sometimes wondered if this was an accident, whether my son's cerebral hemorrhage was related to forceps. Or early caesarean section, the son was born smoothly, the brain is not squeezed, and intracranial hemorrhage can be avoided later. Yue Nan couldn't let go of this.
At 10:45 p.m. on June 10, 2015, his son Nemo was finally born, 8 pounds and 4 pairs. In medicine, newborns weighing up to or more than 8 pounds are macrosomics, which is related to excessive intake of nutrients or genetic genes and environmental factors in pregnant women.
At the moment of birth, the nurse took her son out and let Yue Nan take a look, "Nemo's little eyes are not fully open, it feels like a little more like a mother." Subsequently, the child was sent to the neonatal intensive care unit and slept in an incubator.
At that time, the child was not abnormal, his legs and arms were strong, and he took off the bracelet he wore on his wrist twice the day after he was born.
Three days later, Yue Nan took his wife and children home from the hospital. June 14 is my father's 60th birthday, friends and relatives gather to celebrate, the family is very lively, it can be described as double happiness.
On the seventh day of his life, Yue Nan found that Nemo could climb twice, and when he was full, he kicked his legs. Those days he has been surrounded by happiness, every day when he goes to work, his wife will send photos of the baby, either cute, or snoozing, very cute. As soon as Yue Nan saw his son's photo, the corners of his mouth would involuntarily rise.
(When Nemo was a child)
The child is cared for by the family and the sister-in-law, Yue Nan begins to deal with the backlog of work, and when he comes home at night, the son is usually already asleep. On weekends, he would play with his son all day and bathe him.
The good days were like a dream, and Yue Nan's happiness lasted only 14 days.
After work on June 24, Yue Nan rushed to the hotel where the wedding was held, planning to show the child the venue of the 100-day banquet. At 9 p.m. when he arrived at the hotel, he suddenly received a phone call, and his wife said with a crying voice: "You hurry up, the child has thrown up!" ”
Yue Nan, who hurried home, found that his son was crying vigorously, but it was completely different from usual, several times his face was red but he couldn't cry, and his sister-in-law had never encountered such a situation, and she was helpless.
To a pediatric hospital in Beijing to hang up the emergency department, and then blood tests, B ultrasound and other examinations, the emergency doctor did not see anything unusual, did not find infection, the digestive system is no problem, is a little anemia, but anemia is not the cause of vomiting, so the doctor recommends going home for observation.
(Pediatric emergency at night)
When I got home, the child just fell asleep and cried again, and the milk he drank spit out in a squirt. Yue Nan immediately took his son to the hospital where he was born, and the doctor found that the child's muscle tone was unusually high, suspecting that it was caused by increased intracranial pressure. Because there was no pediatric department in the hospital, it was eventually transferred back to the original hospital.
The next day, Nemo entered the ICU through the green channel, and YueNan's life was completely changed.
In the next two hours, Yue Nan signed three critical illness notices, and the doctor said that the child was in a state of near death due to large-scale intracranial bleeding, which was severe hemophilia type A. "The child's brain tissue has been seriously damaged and is in a liquid form, which means that the brain has become a tofu brain."
(Nemo's test results at the time)
Colleagues helped contact Beijing Children's Hospital, and a director of neurosurgery rushed to consult. She said to Yue Nan: "You can transfer your child to the hospital to prepare for surgery, but even if you do, he will no longer be a good child, you decide for yourself."
Yue Nan still wanted to try.
The situation is critical, when the transfer is five or six o'clock in the afternoon traffic evening rush, colleagues help contact the traffic police and Beijing Traffic Radio, all the way to provide guidance and support, ambulances in the emergency lane speeding, broadcast in the radio a seriously ill children ambulance is going to the children's hospital, please pass the driver to give up the life channel.
In the ambulance, the unconscious son wore an oxygen mask, and the colorful Chang'an Avenue outside the car window blurred into a gray in Yue Nan's eyes. It only took 15 minutes on the road, but it was probably the longest 15 minutes of Yue Nan's life.
At the CHILDREN's Hospital NICU (Neonatal Intensive Care Unit), Yue Nan meets his wife who is paralyzed in a chair in the corridor. The doctor bluntly said that the significance of the operation is not great, it is recommended to give up the treatment, it is best to find someone else to "send the child away", so as not to overly sad parents and family members.
Yue Nan and his wife cried silently, and it was particularly cruel and difficult for them to say "give up" in person, but they had to agree to it bitterly.
Maybe this is the last look, Yue Nan and his wife saw their son with a tube, sitting on the ground with a suppressed cry, and his relatives set them out of the ward...
In just half a month, their happiness was completely shattered by this sudden illness, and their lives fell to the bottom.
Even if you give up treatment, let the child walk with dignity.
After four days in children's hospital, Yue Nan sent her son to the United Family Rehabilitation Hospital.
Nemo only relied on infusions to maintain his life, the intracranial hemostasis drugs were stopped, and every day his family would stuff the bottle into his mouth or wipe it with a cotton swab dipped in water, but he did not know how to swallow.
On the 7th day, the son actually drank a few sips of milk, and even the doctor found it incredible, saying that it was a miracle. Later, the doctor analyzed that the child's skull had not yet been closed, and as the intracranial hemorrhage was absorbed, the cranial pressure also dropped, and the child gradually regained some consciousness, but the damage caused by the brain was irreversible.
"Now that we can drink milk, let's go home!" Since July 4, my son has been drinking more and more milk from 20 milliliters, 40 milliliters to 60 milliliters, the swelling of the head has subsided, and the body has become rounded.
Three months passed quickly, Yue Nan took his son to a follow-up consultation, and the doctor said that the child's brain development had stopped, and it was unknown when life could continue.
(Nemo's birthday cake when he was 5 years old)
"Can't my son call us Mom and Dad anymore?" His wife suddenly sobbed, Yue Nan also cried, and he couldn't answer the question.
Time flowed like this, and although Nemo's brain was no longer developing, his body was still growing, and the sides of his head collapsed, somewhat like a date nucleus. When he was one year old, he could still stand with his hands on the back of the sofa, but by the age of four, he could not sit still, his body could not support it, and sometimes he would be frightened and suddenly have epilepsy, so Yue Nan quickly massaged his ears, nose and hair to relieve it.
(Nemo doing an EEG)
Children can't chew, sometimes they choke on food, and their eyes are attracted to something shiny and shaky, but the eyes are hollow.
"Sometimes I scratch his arm socket and he laughs." Yue Nan said he could feel that his son would prefer to be with his parents, and they would send the children to their parents' house before going to work in the morning, and when they picked them up in the evening, they were obviously happier than when they were sent in the morning.
According to medical data, Yue Nan's son suffers from hemophilia type A, that is, coagulation factor VIII deficiency, also known as AGH deficiency, which is a sex-linked recessive genetic disease, transmitted by women and males.
Patients with hemophilia are commonly known as "glass dolls" and cannot be bumped, otherwise it is very easy to cause subcutaneous or joint bleeding.
Before the age of three, Yue Nan had to take his son to the hospital several times a month to infuse the "eight factors of coagulation", the nurses already knew them, and took good care of the family every time, but the child's blood vessels were not easy to find, and it took up to seven injections at a time to succeed.
(Nemo transfused "clotting factor eight" in the hospital)
In recent years, the child's condition has gradually stabilized, but there have still been two intracranial hemorrhages and one gastrointestinal bleeding.
"To treat gastrointestinal bleeding, you must first go to the gastroenterology department for gastroscopy, but the gastroenterology department is afraid of danger and dare not do it, but the hematology department says that the coagulation factor is transfused and can be done."
Until now, the gastroscope has not been made.
The hospital does not have a green channel for hemophilia patients, the hematology department lets the emergency department go directly to the infusion, but the emergency department has to go through the process, requiring patients to consult with a hematologist first, and there must be expert consultation results to infuse, Yue Nan in such a seriously asymmetrical medical environment, was tossed physically and mentally exhausted.
(Yue Nan accompanied Nemo in the hospital for infusion)
Yue Nan learned that at present, the treatment and social security of hemophilia in China are relatively backward in all aspects. In some countries, people with hemophilia will hang a small green sign on their chest, which is equivalent to telling people about their own situation. In the hospital, patients with hemophilia also have special medical channels, which can be timely transfused with coagulation factors to stop bleeding, but in China, all this is blank.
Nemo, who was more than 5 years old, had grown to 42 pounds, and recent CT results showed that the location near the skull was just a thin circle of brain tissue, and the brain could not develop again. During the day, children can only rely on the elderly to take care of, but the parents are not in good health, the father-in-law has heart disease, the father-in-law is a cerebral infarction, and like many only children, there are old and young Yue Nan in addition to carrying weight forward, there is no other way.
Nemo rarely cried, even when he was in the hospital for infusion needles, he was only excited, almost did not shed tears, and laughed from time to time, maybe he was thinking of something happy in his heart? Yue Nan sometimes thought that, at least, he didn't have to experience the bitterness of the world.
(Yuenan family in the park)
But when the children in the community saw their son in the trolley, the child said " Mother, you see how this child is a little stupid", Yue Nan was still deeply stabbed, he was furious, and even wanted to "smoke that child", but in the end reason let him calm down, he thought that if he couldn't hold it, he wouldn't be a grandfather, so he clenched his teeth and stood up.
In his free time, Yue Nan would go to the temple to worship, or just sit there, where there was a rare peace. His son's illness was a boulder in his heart, heavy and insoluble.
What will we do in the future? That was his biggest concern, and as they grew old decades later, who would be able to take care of their incapacitated son? Is it a community, a nonprofit, a volunteer, or a caring hospital? For now, the outlook is uncertain.
(Yue Nan and Nemo)
There were also very few times, he thought, if there is another critical situation at that time, and it is not saved, is it a relief for the child?
"I have always had a wish to find children and families with the same diseases and the same physical state as my children, so that we can get together and think of ways to share nursing experiences, encourage and support each other." Even if it's just comforting each other, hugging each other for warmth. Yue Nan said.
(Yue Nan holding Nemo by the sea)
He and his lover were so lonely that they needed someone to make a fire in their hearts with them so that they could survive another winter.
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