To give you an idea of what our lives are like, here is a typical day.
We often wake up during the night to make sure that our child is breathing properly, has not pulled at their feeding tube, to reposition their oxygen tube or to restart the feeding tube. Also, we often have to stay up half the night because our child simply does not want to sleep.
We wake up in the morning at the same time as our child, at 4 a.m. or 5 a.m., we unplug their tubes, administer their medications, and prepare their purees. Feeding our child can take up to 90 minutes for each meal.
We go to medical appointments once or twice a week at the hospital, which in many cases is an hour from home. We have to prepare the tube feeding bag, medications, wheelchair, papers, paperwork and prescriptions, just like for a little baby.
When we get home, we do the daily physiotherapy, occupational therapy, speech therapy, and respiratory therapy exercises.
In the evening, we look after their personal hygiene, which can sometimes take up to an hour.
At bedtime, there is more medicine to be administered, a feeding tube to start up, and then we start all over again the next day.
That is an example of a typical day when everything goes smoothly: no convulsions in the middle of the night, no ambulance, and the child does not catch a virus. This typical day does not consider their siblings either.