Baby, Dad grew up with you (the life of a single father and a daughter with hydrocephalus III)

(Continued) It is the first time for our family to take the train, and it is also the first time for the whole family to go out so far. I'm so nervous. I put the extra money directly in my card and took a few hundred dollars with me, but I was still worried that I would be touched at any time, and I was scared all the way. I bought a soft berth, a lower berth and a middle berth because the children are still young. The wife takes the children to sleep in the lower berth, and the bed is too small. My wife is very fat and lacks sleep. I had to put my suitcase on the edge of the lower berth to increase the width of the bed, so that the children slept inside and my wife barely slept outside. Because I heard that the food on the train was not only expensive, but also not delicious, I bought a lot of snacks and instant noodles when I was in Kunming, and spent the whole trip on these things.

Although the scenery along the way is beautiful, I am not in the mood to enjoy it. I just hope that my choice is right, that the doctors in Shanghai Hospital can give better advice, that miracles can happen, that the children will not suffer so much, and that … we will arrive in Shanghai two days later, full of uncertain "hope".

After getting off the train, I found the subway station according to the sign of the station, then took out the route written by Kunming and took the bus to the hotel according to the above route. At that time, I remembered that I booked a hotel at 6+ 1, and the price was ok. It is located at the intersection of Dongfang Road and Lancun Road. It's convenient to eat here. There are many places to eat on Lancun Road. Now this hotel has been renamed Four Seasons Hotel, and the price has also increased a lot. I came and went several times later, but the price was too high to buy, so I had to exchange it for other cheap ones.

After staying in the hotel, the first thing to do is to bathe my daughter who hasn't bathed for two days. It smells delicious. When it was my turn to wash, as soon as I entered the bathroom, I felt that the houses in Shanghai were poorly built, and the floors were all soft and sunken, which scared me to confirm with my feet, but it was difficult-I later learned that it was an illusion that I couldn't adapt to the train for a long time. After washing, the family went to Lancun Road to find a small restaurant (for the first time, I was afraid that a good restaurant would be too expensive) and ordered the cheapest noodles to eat.

After eating, I asked my wife to take the children back to the hotel first. I went to the hospital for a walk and calculated the time on the way, so as not to know how to get there the next morning. Take mobile navigation from the entrance of the hotel, go south along Dongfang Road, cross an intersection and walk a short distance. Knowing the path and distance, I went back to the hotel and had an early rest.

Get up at four o'clock the next morning and go directly to the hospital to register after a simple wash. It's still dark at four o'clock in our place, and it's already bright here in Shanghai. I thought I was early and didn't know I was late until I got to the hospital. The people who queued for registration had already queued up, so I had to wait in the "dragon tail"-later I learned that more than 80% of the people who queued up were "scalpers" (because there was no online appointment or registration at that time, I can make an appointment directly by mobile phone now. I waited until 8 o'clock in the morning, and the registration began. I am very lucky. There are not many people who see the director outside the gods, ranking at 16. Then I hurried back to the hotel and waited in line with my children in the hospital to see a doctor.

At noon, after 1 1, it was finally our turn. I took the child into the clinic and closed the door. The doctor sat in front of the computer and looked at the case in front of him. After entering the door, the doctor looked at me and said, "How is your situation?" I replied: "I was examined in Yunnan, and the child has hydrocephalus. I want to trouble you to have a look." I habitually took out the film I checked in Yunnan and handed it to the doctor. The doctor didn't pick it up and said, "I'll take a look at the child's condition first and put the child to bed."

Only then did I notice that there was a small bed by the wall, which should be used for diagnosis of children. My wife untied the child from her arms and put it on the bed. The doctor came and touched the child's head and limbs, and then took out a bunch of keys. "Ding and Ding" had to dangle in front of her daughter, who smiled and held out her hand to catch it. There were keys and noises inside, and she also giggled from time to time. I told myself in my heart that I had come to the right place in this tiny detail. Unlike other doctors, this doctor just watched the film and didn't look at the child's situation. At that time, he almost choked up and tears swirled in his eyes.

The doctor looked at it for a while, and the daughter turned and sat back in her seat. She took the film I still held in my hand and put it on the viewing lamp. She looked at it carefully. At this moment, I even dare not breathe loudly, for fear that my breathing will disturb the doctor's thinking. After a while, the doctor watched the film and asked, "How old is the child? When was it discovered? " I quickly replied, "I found it about 8 months or 6 months ago. The medical conditions there are not good, so I came to you."

The doctor stopped talking, carefully observed the film, and his wife was teasing the child. I told her to keep her voice down in the future for fear of affecting the doctor. About five minutes later, the doctor said to me, "Your daughter's communicating hydrocephalus is serious and must be treated by surgery. The smaller the disease, the better the prognosis. "

When I heard that I was going to have surgery, my heart thumped and I thought, "It seems that surgery is inevitable, but I didn't bring much money when I came, but I just planned to come and have a look. Now I want to have an operation. What should I do? Where is the money? Then there is whether the doctor's surgical plan will be like that of doctors in Yunnan. When the child grows up, he must do another tube replacement operation. " .

The doctor seemed to see through my worry and asked, "Where are you from?" "Yunnan, Yunnan Pu 'er" I quickly answered.

"What about family conditions?"

"I have a job, my wife has no job, and my family conditions can only be said to be average."

"The child's condition is really serious and must be operated on. Do you think I should give you a hospital now or think about it? "

"Doctor, if surgery, how to do? How much does it cost? "

"Your child got the disease, that cerebrospinal fluid secretion is too much, the brain can't absorb. Excess cerebrospinal fluid accumulates in the child's head, causing pressure on the child's brain. Look here, it is already very thin, almost thicker than a leaf. " He pointed to a position on the film.

"The best way to treat this disease now is drainage, that is, make a hole in the head, put a drainage tube in it, and drain the excess cerebrospinal fluid to the abdomen through the tube for the children to absorb."

He paused and said, "If you have an operation, I will give you some advice according to your family situation: if you have a tube, it can be divided into ordinary, slightly better, antibacterial and less infection;" The valve can be adjusted according to whether you need to install it. It can be divided into nuclear magnetic vibration and nuclear magnetic vibration. The price is generally more than 60,000 yuan, and the antibacterial is almost 65,438+10,000 yuan. Which one do you think is suitable? "

Considering that my daughter is still young, I can't guarantee that she won't need an MRI in her later life. Besides, I looked it up online before. The biggest fear of hydrocephalus shunt operation is the blockage of drainage tube and the infection caused by drainage tube In that case, it will endanger the child's life, and the second is to have another operation, so I asked, "Doctor, if you choose an antibacterial valve, how much does it cost to have an MRI?" Including hospitalization, surgery, etc. "

"Well, I'll make a list for you to choose from according to your actual situation," he foolishly wrote on a piece of paper. At this time, my daughter began to cry, and I remembered that I had given my daughter some milk powder before coming to the hospital in the morning. She had not eaten yet. She should be hungry, too. She quickly took out the prepared milk powder from her backpack, opened the lid and handed it to her wife. When the daughter saw something to eat, she quickly put her arms around her, put the pacifier in her mouth in a hurry, kept sucking and showed a satisfied smile.

"Look at these schemes. According to your actual situation, which one do you think is right for you? " He handed me the paper he had just finished.

1, the cost of common tube plus hospitalization operation is about 80,000-90,000 yuan.

2. The cost of common tube+valve+hospitalization operation is about 10- 1 10000 yuan.

3. The cost of snake tube+valve (which can be used for MRI)+hospitalization operation is about13-140,000 yuan.

I looked at the cost of paper and my brain was buzzing-at least 80 thousand. Where did you get so much money? I used to take my children to visit the hospital in Yunnan. I spent almost 40 thousand on examination, medical treatment and travel expenses, which were basically given by relatives and parents at home. Now, if I do this operation, where can I get the money?

"Doctor, if the child has this operation, can he unplug the tube when he grows up?" With a glimmer of hope, I asked weakly.

"If this disease is operated, the current medical conditions can only be lifelong management."

"So, if you have an operation, do you need a second operation when the child grows to a certain extent and takes out the buried pipe and then returns another root cutting?" That's what worries me most, so I'm in a hurry to ask.

"Oh, this need not, as long as your child is not very tall in the future, if it grows to one meter, it is necessary to change the pipe again. If it is only less than one meter seven, it is generally unnecessary. If there is a blockage or infection, you must re-operate. "

After hearing what he said, my hanging heart finally got a little comfort.

"Doctor, is my daughter's illness congenital or acquired?"

"Congenital, that is, it existed in the fetal period."

"Later I heard them say that the fetus can see hydrocephalus. Why did my daughter find this a few months after her birth? " I asked.

"It's hard to say. Generally speaking, B-ultrasound can be seen in the fetal period, but ... "He glanced at his wife standing behind me and continued," Sometimes it is not necessarily accurate, and it may not be seen. "

As soon as I turned around, my wife hurriedly bowed her head to coax the child to nurse. I looked at her, then turned to the doctor and said, "So, doctor, can you tell me the prognosis of this child?"

The doctor carefully watched the film again, thought for a moment, and said, "If your child is ill, if you don't have surgical intervention, the consequences will be very serious, such as paralysis, inability to take care of yourself, mental disability, etc." He paused and said: "At present, the child is still young. If you have surgery now, your development will basically keep up, and it may have some influence on your movements in the future, that is, the coordination of your limbs; Intelligence can only be said to be basically ok, but it is weaker than peers, which means that if you study, your grades will not be very good; I can basically take care of myself in my future life. "

I listened to his words in my ears, and my mind kept turning his prognosis into an image and playing it in my mind. In that image, the child walks unsteadily and his academic performance is in a mess ... I shook my head as if I wanted to shake myself out of this reality and make myself think it was just a dream.

I came to my senses and said to the doctor, "Doctor, let's go back and think about it."

"Well, I won't give you a hospital certificate for the time being. Come to me directly when you think about it," he said, putting aside the hospital certificate at hand.

I turned to my wife and said, "Pick up the baby and let's go back first." .

Then he turned and extended his right hand to the doctor and said, "Thank you!"

This is my special badge-Bao Nan, director of neurosurgery.

I put away the film, put on my backpack, opened the door, walked out of the clinic with my wife and children, and went back to the hotel to discuss the next fate of the children. (To be continued)