This post is going to explain to you what it is like to care for a child with a tracheostomy from the perspective of a parent who has been lovingly caring for his Trisomy 13 son with a tracheostomy for the past 2 and half years.
Firstly, a quick breakdown of each task required in caring for our son's trach:
- Suctioning - takes about 30 seconds - occurs about 40 times per day on average
- Cleaning & Changing Band - takes about 5 minutes - occurs once per day
- Changing Cannula - takes about 5 minutes - occurs once per month
The first month (in hospital)
Our son was moved from the NICU (Neonatal Intensive Care Unit), where he was taken immediately following his birth, to the GCU (Growing Care Unit), where he remained for the final month of his 3 month hospital stay. During this final month, after he had his tracheotomy, we received increasingly intensive instruction from the nurses and doctors about how to care for our son's trach. This included:
- Suctioning (removing mucous from the trach using a catheter attached to an electric suction pump)
- Cleaning and changing the cannula (the trach tube) and band
- How to safely bathe our son, how to use the trach with a ventilator
- General handling of the trach when interacting with him
These lessons started out as observation only; we watched the nurses performing the various tasks, as they described to us what they were doing at each moment. Then, once we were comfortable, we started to perform each task ourselves under the strict supervision of a nurse or two, who would intervene and take over whenever necessary. Some tasks were done with a partner (such as bathing, cleaning/changing the band, and changing the cannula), in which case one of us would be paired with a nurse to carry out the task. After enough time had passed and, again, we were comfortable, we would take over entirely and be permitted to carry out the tasks on our own. The nurses were always nearby in case we got into trouble, but they otherwise left us to take care of him ourselves during our visits. We even spent the night alone with him at the hospital in the 'family room' during which time we were fully responsible for his care. We didn't sleep much (actually I don't think I got a single moment of sleep), but what a truly wonderful and memorable night that was.
The first year (home care)
Bringing our son home was a very special day, however, we were not alone. A contingent of nurses and health care staff joined us on that first day; the former of which would continue to visit us on a twice-weekly basis for the next 6 months, providing support for us when performing some of the more complex tasks (namely, changing and cleaning the cannula) and performing some light health checks on our son to make sure his health was progressing as well as possible. However, the vast majority of the time we were completely alone; day and night we managed his trach and made sure he was as comfortable as possible at all times. At this point in his life he required 24/7 care, which meant that my wife and I took turns caring for him throughout the night (sleeping in shifts), and shared the responsibility during the day. Luckily I'm an extreme night-owl, and we run a small business from home, so this lifestyle was actually quite natural for us.
Suctioning became a huge part of our lives. It was (and still is) the #1 most time consuming and by far the most frequent task involved in caring for our son's trach. During one of our busiest suctioning days (I think he had a fever or something), we counted a massive total of 80 suctions (including mouth/nose and trach). Admittedly, this was an exceptional day, and I mean that in the most negative sense of the word; it was a total nightmare. On average these days I'd say we suction about 45 times, and on very good days it's probably closer to 35. To be honest, we never count it anymore; it has just become such a regular activity in our lives that we barely even notice it. The only time is more than just a mild inconvenience is when we take our son outside into the big wide world; then it becomes a very different beast.
our suctioning setup at home
Our suctioning setup at home is great: it is raised up on a trolley at a very comfortable height - no bending or kneeling required - and can be wheeled around to ensure maximum convenience at all times. However, going out is a totally different story. That setup is right at the bottom of our son's pram/stroller, and requires us to kneel down and struggle with the tubes, water bottles, alcohol wipes, and tube storage bottles... It is a total mess, and has been on my to-do list to upgrade for a very long time (damn my proclivity for procrastination!). I think we're just lucky we are a family of homebodies, and thus don't go out all that often! I highly recommend creating a convenient suctioning setup for outings - it might require some investment, but it will be worth it in the long run.
The first year continued (with ventilator)
For the first year of our son's life, he required a ventilator in order to breathe whilst maintaining a safe level of oxygen saturation. This posed a number of challenges for us as parents, the most problematic of which was that we had to be extremely alert to the possibility that his movement would put pressure on the ventilator tube, which could then pull his trach out of his throat. Luckily (perhaps due to our 24/7 attention and hyper-vigilance) this only happened once or twice, however, it was a constant source of stress for us. However, there were other challenges as well, including:
- The ventilator tube would very regularly come loose, which would trigger an alarm to sound. The tube would need to be placed back on his trach within about 3-4 seconds to avoid the alarm sounding (and waking everybody up!), which resulted in countless instances of jumping up and rushing to fix it or mute the alarm.
- The ventilator tube restricted his movement quite a lot - mostly due to the risk of pulling out his trach mentioned above), but also just because the attachment protruded from his throat, and the tube itself would often become taut and thus prevent him from moving too much.
- Cuddling or picking him up at all was quite an ordeal with the ventilator attached. It meant that we really couldn't comfortably cuddle him for an extended period, because the tube would constantly become detached and cause endless amounts of frustration.
- Bathing was a slightly nerve-wracking activity, particularly in the beginning, since we weren't sure how long he could survive without his ventilator, and we had to detach both the ventilator and the heart monitor during bathing, so we couldn't watch his oxygen levels during the bath. Thankfully, our fears turned out to be unfounded, and he was always totally fine without the ventilator for 5-10 minute baths, but it was a source of stress nonetheless.
- Going out was a bit of a nightmare with the ventilator. It would constantly detach, fall on the ground and need to be cleaned with alcohol wipes, tied in place to prevent falls, and just generally get in the way (as it always did!). It was also very loud (the air pumping sound, and the alarm sounds) and would draw a lot of unwanted attention from people around us.
everything we needed to go out (ventilator, suction machine, heart monitor)
our son with his ventilator tube attached to his trach
The second year (without ventilator) - to date
Eventually, we discovered that our son no longer needed his ventilator to maintain a good level of oxygen saturation. This happened over a period of a month or so where we closely monitored him without his ventilator, keeping a close eye on his oxygen saturation and heart rate, as well as just watching his skin colour, mood, and activity levels. To our extreme joy and relieve, he seemed totally comfortable breathing on his own through a filter attached to his trach. I still remember the day that we switched off his ventilator machine for the first time ever, and we were able to actually hear our son's natural breathing sounds; it was one of the happiest days of my life. And what an absolute pleasure it was to no longer have our house sound like a hospital; those ventilator noises and alarms that rang through our house for what seemed like forever were finally replaced with the wonderful sound of our son's breath.
lyly having a great time breathing on his own
Suctioning is still something that is a reasonably significant part of his care, however, this does seem to come in waves. We're still not sure what exactly causes spikes and drops in the frequency of suctioning (the amount of mucous in his throat/trach), but it can vary by quite a large amount; ranging from around 25-60 times per day. However, we're so accustomed to it by now that it is not a huge inconvenience, and has become just a very normal part of the way we interact with our son.
One thing that has become such a key joy in our lives since removing him from his ventilator is the ease with which we're able to engage with him. Cuddling him, playing with him, and moving him around, have all become so much more natural, and finally somewhat resembles the way we would be able to play with any "normal" healthy child. Of course, he is still unable to walk or crawl, but at least he's no longer impeded by a giant plastic tube protruding from his throat!
Going out has also become much easier. These days we're able to go out without anything at all, except for his pram and a small manual suction device that can be carried by hand or in a small bag, or perhaps the electric suction machine if he's having a bad day.
And that brings us to the present day...
Our son's trach has become part of his body. It is a medical device to us, but to him it is simply an extension of his airways. He has been using it since he was 1 month old, and he will likely continue using it for the rest of his life. It has both saved his life, and improved his life immeasurably, and we cannot possibly be more grateful for the technology and the doctors for recommending and providing him with it.
Thank you for reading. Please post any questions in the comments, and I will be more than happy to answer them to the best of my ability.
this blog post inspired the creation of this youtube video
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