At 24 hours of age Katarina had difficulties breathing and she was cyanotic. Her sats was too low and she came to spend her first month in hospital. It was not quite clear what caused her problems but her saturation levels were finally good enough to admit her to home.
When Katarina was eight months an infection caused increasing breathing problems. She was admitted to hospital and was resultlessly treated with different drugs to expand her strained trachea. After 12 hours she was admitted to ICU, her problems worsened and a few hours later she had a nasal tube and a ventilator connected to her.
She was out of the vent after some 48 hours but extubation-trials were not successful; she did not manage to breathe on her own.
After a month there was no way of avoiding the tracheotomy. Apart from the fact that a thick tube down your nose is not very comfortable, a nasal tube irritates the trachea and may cause damage and scars that worsen the original problem. A tracheostomy, a tube direct into trachea, stays put and is more comfortable for persons in need of longterm breathing-support. Surgery was successfull and Katarina soon looked much better.
Katarina's problems appeared to be caused by a very narrow and instable trachea plus excess tissue between the vocal cords. The infection had most likely led to strained breathing meaning every inhalation had dragged the tracheal-walls towards each other and irritated the excess tissue until it swelled and blocked the airway.
The swelling was present for months and made Katarina dependant on her trach as extubation could lead to another tracheal collapse.
Realizing the trach would stay put for a long time we took Katarina home. A year later she was able to start using a speech-valve with a personally designed fenestrated tracheal-tube.
Katarina found the voice she had not heard for a year extremely amuzing. She babbled nonstop until so tired she cried and when we took her speechvalve off she sighed happily and immediately went to sleep. It was as if she said: "So you finally come to turn me off so I can go to sleep!"
We put the speechvalve back after she had fallen asleep and eventually she seemed to undestand that it was possible to be quiet even with a speechvalve...
It is fairly unusual for a trach-user to use a speech-valve during sleep, but Katarina's specialist recommended use of the speech-valve round the clock as Katarina put more power into breathing when on the valve. Without it her breathing tended to surface; became quick and light.
Katarina got lots of infections through the tube and was on more anthibiotics than most people experience in a lifetime, but she got stronger and stronger as years went by and we became pretty good at stopping infections before they spread too much in her body.
The trach eventually became a natural part of our daily life. One do get used to a home overloaded with sterile equipment for single use and to generating an amount of garbage equaling a three times as big a family. And one gets used to sleeping with ears open to hear Katarina dropping her speech-valve at night or needing to have her trachea suctioned.
Our biggest problem was finding a wheelchair lightweighted and narrow enough to let Katarina wheel it, but stable enogh to manage the portable suction unit that had to be carried every time we left places with a permanent suction machine, like home, daycare or school. The solution was two chairs, as Katarina had not learned to actually wheel the chair; she was practising: one tiny, lightweight chair for practising indoors and one big stable for transport purposes.
We do not longer have to worry about the day Katarina would actually wheel herself around. Katarina left us at a time when it looked like we would finally see the end of trach-days. She had an appointment for a bronch and possible extubation. She breathed fine with the trach plugged...
annika_60@hotmail.com
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