The worst are the nights are

It was in the previous night Till the Hand on heart and says it hurt him. His father takes him immediately to the pulse and sees Till's heart is racing, beating 240 times per Minute. The Till won't last long, his body may not produce enough energy for it.

As plan for the family, the emergency on the train: a woman awaken, Metabolik Team at the hospital alert, a supervisor for the nurse to call the food wrap, diapers, Till into the car and away. Hardly you are in front of the hospital advanced, crowds of people dressed in white coats around you, put Till an Infusion, bonding Pads on his bare back. And stop his raging heart.

The fear remains

A day later, the family sits in the living room, as if there had never been an emergency. The father reads from the "dragon riders", the mother massages her son. What other family of the state of exception, for the Bucher family almost Routine. Again and again you need to with one of their children to the emergency. Her son, Till (9) suffers from Mitochondriopathie, her daughter Zoe (8) on Cystic fibrosis, both of which are rare and not curable metabolic diseases.

But even if the family has already experienced a number of emergencies, they never lose their terror. "You never know how it comes out," says Gregor Bucher. To beat Till's heart, which was brought to a standstill, it will start again?

Next to Zoe on the Sofa, a small device hums and hisses. It looks like a toy radio with hose. The end keeps Zoe on the mouth and breathes in and out deeply. Inhale is an integral part of a long and strictly timed day.

The vacation you keep from falling to the stop: Bucher family.

The day starts on the eve. Then the parents put together the medication and prepare Tills meals. Powder and boiling water mix to a creamy soup. In the Morning at 6 o'clock you will take the boy with him into the bathroom carrying, change diapers, clean him, clothe him the soup and breathe through the artificial gastric access. At this time Zoe have already started your program: inhale, inhale, nose rinse, gymnastics. For this you need to have a whole hour. Zoe needs to open up the Airways so that you can loosen the thick mucus in the lungs, and spit it out.

That every Morning and every night, every day, all year. After the morning program, the children go to school. Zoe is a regular class, Till visited a school for children with multiple disabilities. At noon, the parents pick him up, change diapers, and hang him, as they say, to the soup. Till you can't stand yourself, and not to run; he has pointed feet, a bent spine, and his body there is a lack of power. He must be regularly moved so that the joints remain mobile.

There's someone home

is always How the family of the? Gregor Bucher works three days a week as a secondary school teacher, Renate Bucher two as an Osteopath. So every day a mother or father is at home. In addition, a home care worker comes in the morning, respectively. So you can cope with the day. But only if no one falls from the clock, no one is sick or injured, if no child micro captures bacteria, or longer to the hospital must. Because then one of the parents stays with the child in the hospital, and the other one needs to ensure to home alone for the other. To work, you can go then.

worst of all are the nights. Till is uneasy in the night, his respiratory system a waste of glue and the nose become clogged. He can't sit up alone. Therefore, every night is someone with him, rinses his nose and helps him get the mucus abzuhusten. Till does not sleep much – his supervisor also. The parents alternately during four nights per week with him, the Spitex three – so much you can get for the time being paid.

"It's the nights which go to the substance", says Renate Bucher. If they are especially restless, you sometimes only an hour of sleep – and the next day, the metered program awaits you.

And yet, As Renate Bucher, a well-Known told that you get as a family with sick children from a private Initiative, a Lunchbox, as Till asked dumbfounded: "Who is sick here?"

"We said to ourselves: That we take": Gregor Bucher with Zoe, she suffers from Cystic fibrosis.

came Till to the world, pointing is nothing to suggest that he has a disability. He crawled soon as any other Baby. When he was 10 months old, began his eyes to flicker. Till was investigated, and it turned out that he suffered from this rare genetic disease. As Renate Bucher was already pregnant with Zoe. You would have known to Tills disease, she said, she would not have dared to have a second child.

Also Zoe seemed to be only healthy. It was only when she was two years old, was diagnosed with Cystic fibrosis. A disease that is incurable, and the Affected person only can live with, if you take each day, the time-intensive therapies to.

"We said to ourselves: we take," says Gregor Bucher. In comparison to Tills severe disability, a disease such as cystic fibrosis seemed to be even acceptable. But so lightly, as he is saying this now, as he admits, he has this diagnosis does not accept. He had been at odds with the Situation and finally went to a psychologist. Soon, however, he realized: It doesn't bring him more. The psychologist would have him able to accompany. The Situation he has to cope with but yourself.

The parents were able to cancel the funeral again.

The mother laid Till on the back, and bends and stretches his legs, and hugs him. "You can despair if this is the Situation, or we can be grateful that we can do something for our children," she says. They had the best conditions, would be supported by the community nursing, specialist Teams from the island's hospital and their families. Using their parents and the IV, you could have your apartment modified, as needed. Who could otherwise make it, so don't ask if you made it under these conditions?

Ultimately, says Renate Bucher, says be it the holidays that kept you from getting to the stop. Then you take care of your children alone, but the time pressure is off. She tells how the children went to Italy together on the market. Zoe pushed the wheelchair, and the Till broke in the front of the ice. He beamed at the women behind the market stalls – and wanted to do the children Good. They came with Apples and honey home. From such memories of the family lives.

But it is already a weekend on the Engstligenalp for you to adventure. There, she once visited a friends family. The Alp, however, is only accessible by cable car, and the house works without electricity. But how the inhaler is to get the device to power or the Mixer, it needs to Tills soup compulsory? And what would happen if in the middle of the night, a child would have to go to the hospital? So they Packed, in addition to all medicines and medical equipment, a backup generator and made sure that you can drive in an emergency with the transport gondola to the valley.

"Our time together is limited, and that makes it so valuable," says Renate Bucher about their family lives.

Gregor Bucher has as a teacher already 13 weeks of school, Renate Bucher takes to make your vacation even unpaid days, so that you freihat 10 weeks. Without it would not work. So they make at their own cost, of what took place on Wednesday according to the national Council in the Council of States approval: management leave of up to 14 weeks for parents of seriously ill children (for the message).

What would be the Alternative to your everyday life? To give Till in a home, not for the parents in question. You want to have your son. "Our time together is limited, and that makes it so valuable," says Renate Bucher. Children with Cystic fibrosis today have good chances to be 50 years old. For Till but the forecasts are uncertain. His muscles, despite therapies is becoming weaker. And once, one of his lungs was collapsed. He could no longer cough up the phlegm and was in the hospital on hoses. His parents had arranged the funeral already, and they could cancel again.

Created: 04.12.2019, 15:04 PM