Little Sebastian traveled for a touch to the big chick: ARO and complications! Hospitals owe astronomical sum – Topky.sk

Little Sebastian is five years old, however, he does not enjoy the beauty of childhood as much as his peers. His life depends on a special device that helps him breathe. From birth, however, he struggles with pitfalls – Sebastián is the second child of Mirka and Radoslav Janotirov, who asked the world prematurely, with insufficiently developed lungs.

After birth, he had to be resuscitated and connected to artificial lung ventilation. He was only a few weeks old when his own mother had to revive him. “The carousel of investigations has begun. It lasted indefinitely, several months, until then the doctors tried to help Seb at least with medication, but nothing helped, respiratory arrest was more frequent… Examinations showed basically nothing authoritative, polysomnography in Martin showed that it is a central problem (central sleep apnea ). However, the respiratory arrest did not subside, ” explained Sebastian’s mother Mirka.

Sebastián has been at the children’s ARO at Boston Hospital for 4 weeks.

Source: FB / Sebastian – our biggest fighter

“And so it was necessary to ensure breathing so that Sebastián would not die to us during sleep (when he stopped breathing). operations continued to increase, “ she added.

Hope for the “big girl”

However, his diagnosis was clear – tracheobronchomalation. In addition, Sebastián has other diagnoses, such as epilepsy as a result of cardiac arrest, after which he had to be resuscitated, swallowing disorder or neurovegetative dystonia. However, breathing problems do not stop, on the contrary, they get worse.

Unhappy parents therefore decided what to do next. The hope for them was the hospital in Boston, which offered to help them. They do a special procedure – tracheopexy. It is a procedure during which Doctors can fix softened and deformed cartilage on the trachea according to the condition of the surrounding organs or vertebrae of the spine. They also perform this procedure in Europe, but the condition is the older age of the child and genetically confirmed disease of CHD, ie congenital hypovetilation syndrome. But they don’t have that.

They asked people for help, and they managed to raise a decent amount to go to Boston a few months ago. Since then, however, the family has been struggling with several problems that caused little Sebastian to end up at the children’s ARE. The money they had collected for surgery now had to be used to diagnose other complications. Sebastián’s digestion failed, his intestines did not work, he had to connect him to the devices, he fought with extremely high fevers over 40 degrees Celsius, he was bleeding from the cannula and from all openings. In addition, they received results from genetics, which confirmed the damaged gene.

“He found a damaged gene from the so-called hypoventilation and Apnea Panel. These are very rare diagnoses, ” Mirka explained, stating that they had also confirmed rotavirus in Sebastian’s case. The problem, however, is that one day at a children’s ARE in Boston is an extremely expensive salvation – it costs over $ 9,000, without drugs or other procedures. In mid-October, they suddenly had to operate on him. “They tried to stop the main bronchial vessel by embolization and coughing up large amounts of blood, which started again. They performed the operation at a very high risk of other complications, not only the bleeding itself, which is a risk, but they did it at the time of infection, RSV virus and everything behind it and exhausted organism is a huge risk as well, and its basic diagnosis and damage to mention, but they didn’t even give us a choice. Nevertheless there is no doubt that they saved his life with this intervention, “ explains the unhappy mom.

To date, he has been at the ARE for more than a month and the costs of his hospitalization are rising. As of October 24, the family owed the Boston hospital more than $ 520,000 (more than € 448,000) – in about three weeks of hospitalization. The invoice for medical procedures, medicines, hospitalization and the like has 25 pages. “He is not in a state of release even if we do not know how he wanted to, he is still in danger and we can do nothing but wait for him to get better and pray for help.” Mirka wrote. On the transparent account they have currently collected more than 406,000 euros.

At the end of October, however, Sebi’s condition began to improve slowly. “Although we are still waiting for a negative blood culture, antibiotics are working, plus he got antifungals because the mold also grew twice in the blood culture, both from the peripheral intake and the headquarters before. But the last bleeding on Tuesday, since then, as well as the temperature – since then (on the drugs, yes, still, but still), “ Mirka wrote. In addition, it received a reply from the Slovak health insurance company, according to which, under current legislation, it is possible in the case of urgent health care to reimburse costs in the amount of prices that are in Slovakia for similar health care.

In other words – they will reimburse them for the part of the costs that will be calculated on the basis of the prices of medical procedures in Slovakia. This is also a small hope for the family in the future, although the invoice for the stay in the Boston hospital will have to be snapped out of their own pocket first. “We still have a long way to go, which absolutely no one, even in the worst, did not expect, but we have no choice but to endure, ” mom concluded.

In addition, however, she had to fight another unpleasant situation – and that is “encouraging” comments on social networks. Some people advised Mirka to stop healing Sebi and let him live. “The boy just suffers and suffers, he has pain every day, he can’t breathe, play and walk, he doesn’t know normal life. It can no longer be watched, the procedure itself, resuscitation, bleeding, hoses, infusions and the hospital. Who wants to live like this, who? ” wrote one discussant.

However, Mirka sends a clear message to everyone. “Emotions, anger, fear are beating in us … But … People, please, let’s still be people … If you already need to express yourself in such a public way, and still write to us privately, how many I write to you are just as afraid to write it in public, and how many agree with you. So please all the others … next time sit on your fingers, think your own and ignore the post … Go and hug your healthy childi. Sometimes it’s less, “ she pointed out.

Hope for the “big girl”

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