When he was born, his most urgent, life-threatening, and obvious problem was his breathing. The doctors told us that he just "forgot to keep breathing" and that the main problem was in his brain. They guessed that his brain was not consistently sending the signal to breathe to the rest of his body, and so, he simply stopped breathing at seemingly random intervals. I didn't know it at the time, but the first time I laid my eyes on my son would be the last time for 2 months that I would see his face unobscured by the tubes and masks of various ventilators (and feeding apparatus), as the doctors tried to find the best solution to this potentially catastrophic problem.
For the first few weeks, the doctors tried a range of different ventilator systems, starting first with the least invasive, and ending with full-on intubation with a breathing tube inserted through his mouth and into his lungs. Once we reached this stage, we knew a tracheostomy was our only hope if we were to a) save our son's life and b) be able to take him home and start our life together.
Seeing your child struggle with one of the most fundamental processes of life is such a heart-breaking experience, particularly when that struggle regularly resulted in them falling unconscious and needing to be resuscitated by a team of doctors and nurses. The only thing we wanted at this point was to help him be as comfortable as possible, and a trach was how we would achieve that.
Just after trach surgery
About 1 month after trach surgery (the day we took him home!)
Whilst having a trach did not resolve every single problem he had with breathing, it was an absolutely massive jump forward. We no longer worried whether or not he would make it through the night in the NICU, and started planning for the day he would come home with us. And with this, we were introduced to the world of suctioning!
Our suctioning setup at home
Suctioning is one of the most important but time consuming parts of caring for a person with a trach. It is the process of removing excess mucous/saliva/etc from the trach tube (cannula) with a tube attached to an air pump. Each suction procedure takes only about 30 seconds, but can be something that is required 100+ times per day, although this would be considered a very very bad day! On most days, my guess is that we suction probably 40-50 times in total.
Suctioning is one of those things that impacts your life as a trach parent in so many ways. From simple things like having to pause a movie for 15 seconds every 10 minutes or so, to the extra equipment/bags/etc you'll need to bring with you on every outing with your child. It is something you'll need to be prepared to do and listening out for (as there are many audible cues) every single moment of your life from the first minute your child has their trach installed. Even just a single seemingly insignificant mistake, a lapse in attention, a careless move, can result in the pain, suffering, and even death of your child. Infection is a real concern, as is aspiration pneumonia. Both are major killers of those with trachs, particularly trisomy children.
Other important parts of caring for a person with a trach include the replacement of the tube (cannula) with a fresh one once every 1-2 months, and cleaning the area around the trach and replacing the trach band on a daily basis. Both are relatively delicate processes that take time to learn, and need to be done with care given to sterilisation of tools and hand hygiene.
Accepting a trach for your child is entering into a life of 24-hour care-giving, and creating some massive obstacles for both parents and child to overcome. But doing so can also be like finding one of the most essential missing pieces of the puzzle that, when matched with the rest of the pieces, will save the life of your child, and help ensure they live the longest and most comfortable life possible.
What more could a parent wish for?
Today (July 2020) playing with a toy (a plastic syringe) breathing on his own through his trach with a disposable air filter
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