We plan to do LeoOperation, which is implanting breathing pacemakers (diaphragm pacars), thanks to which we will be able to get rid of tracheotomy !!!
Unfortunately, this operation is not performed in Poland, so we decided to do it in swedish University Childrens Hospital (Akademiska Sjukhuset) in Uppsala.
We have decided to use the breathing pacemaker by Avery. All the details you can find on their website: http://www.averybiomedical.com/breathing-pacemakers/
It costs around 100 000 EUR.
A breathing pacemaker consists of surgically implanted receivers and electrodes and an external transmitter with antennas worn directly over the implanted receivers. The external transmitter and antennas send radiofrequency energy to the implanted receivers just under the skin. The receivers then convert the radio waves into stimulating pulses. These pulses are then sent down the electrodes to the phrenic nerves, causing the diaphragms to contract. This contraction causes inhalation of air. When the pulses stop, the diaphragms relax and exhalation occurs. Repetition of this series of pulses produces a normal breathing pattern..
Unfortunately, we will still have to turn it on and off, just like the ventilator, but:
- approximately one year after the operation we will be able to get rid of tracheotomy !!!!
- the external transmitter is much smaller and lighter than the ventilator and uses much less energy (you can use simple batteries, without the necessity of connecting it to AC)
- everyone says, that the comfort of living, both parents and children, is much better after the opearation
- we might even have more peaceful nights !!!
- we will be able to travel everywhere, not being limited by all this medical equipment !!!
- using breathing pacemaker is much better for the lungs, as it stimulates normal breathing (not pumping the air inside, like in case of a ventilator)
- operation itself is not very invasive