Miksa
TrachKid Profile
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Miksa is our first son. He arrived on time after a normal pregnancy. He was born with c-sec. He had club foot (only left side), otherwise he was absolutely healthy and lovely. He was looking into the world with huge brown eyes – and he is doing it up to now :).
At the age of 3 weeks we were took to the local hospital because of breathing difficulty and throaty crying. When arriving at the hospital they only could notice a little prolonged exhalation. After one day of observation he was allowed to go home with cold mist and if needed salbutamol therapy: the diagnosis was bronchitis.
At the age of 2 month he had breathing difficulty at the night after feeding. He turned grey, but after I have given him an air puff with my mouth, he become all right, was happy like nothing had happened. The same situation happened again in the morning, so the ambulance took us to the hospital. He was diagnosed with subglottic haemangiom: closing his airway 50 %. We were allowed to go home. He was 4, 5 month old, when the same happened: after feeding he turned grey, so we took him to the hospital.
It was time for tracheostomy.
At the ICU he had severe complications, including respiratory arrest, so it took us a little longer to get home again. Unfortunately it had not only short time affects, but a tracheal stenosis has also developed, which nobody noticed in time….
He got a long metal canule – with a shorter one he could not breathe.
This long canule stented his airway, so we did not have recognized, how serious the situation was, until this started to be short for him.After several months he had prolonged exhalation – sometimes worse, sometimes better. His trachea was bleeding very often. We did not get any answer why it is, they said it can be normal to a child with tracheostomy. I continuously felt, that something is wrong. It should not be like this…
I requested an examination in the hospital, and it turned out, that he has severe tracheomalacia and a stenosis right at the carina. It was terrifying, but we were not recommended by any acceptable solutions, so we started to look for other possibilities.I have sent an email to Dr. Cotton, who recommended us a French professor: Professor Froehlich. After reading our story he agreed to accept Miksa for an endoscopy.
He diagnosed him with trahceomalacia, and tracheal stenosis. He did not find any sings of hemangiom.
He explained, that Miksa is in extreme danger, he is breathing through only 20 percent of his trachea, the stenosis is almost inoperable, as it is in a very dangerous place. He has also explained that there is not any chance for him to outgrow this.I contacted several hospitals in Hungary, where we used to live, but all told me, that we are already treated by the best team. I realized that we have to find a way to have the best medical environment for Miksa, so we moved to Austria.
In Graz (Austria), there is a fantastic children’s hospital, with a wonderful ICU and Pulmonology unit. I can not tell enough how faithful we are for what they did for us!
We met in Graz Professor Eber and explained him not only our medical history, but also the efforts we to provide a normal life for Miksa. The professor was really surprised that a child with so severe respiratory problem could be so well developed – I do not have to mention that it required extreme efforts from me and my husband.
After performing the examination the head of the department just said to me: this is what I call a destroyed trachea….
They explained, that they had to do something, because, Miksa will not survive. They changed his metallic tube into a shily one, but his trachea started to collapse. He was put on positive airway pressure ventilation with extreme high cpap. This was not enough, the secretion blocked his trahcea, and his saturation was down to 30. The whole ICU team was fighting for Miksa to stay alive, and thanks to God, he stayed. He was in deep anesthesia waiting to be operated. Nobody gave a lot of chance for Miksa. His trachea was so floppy, that it felt together at once, and the scar tissue was in a very dangerous place worsening the problem. The doctors discussed hours and hours the possibilities. They decided to operate with laser as little as possible and week by week small operation following each other they trying to open his trachea. The doctors made a fantastic job, only 2 surgeries were enough and they could also reduce the positive airway pressure – so at the end Miksa needed it only at nights for sleeping. After 1,5 month which was a very hard period in our life we were out of the hospital with a healthy trach kid.
He is now playing, chatting happily using PMV.
The control endoscopy , which was in last week in October showed no renewing stenosis and a hardening tracheal wall, so all together a very positive picture.
We all hope that this tendency will continue and ask God for further help and support.I would like to catch this opportunity to thank again for all the doctors, nurses, physiotherapeutists in Graz, who gave Miksa a chance for a normal, long life.
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- Member for
- 1 year 42 weeks
Location
- Country
- Hungary
