May kicks off Global Tracheostomy Awareness month, with Global Tracheostomy Tube Awareness Week beginning on May 14, 2017.
In the realm of Trach life, we have been blessed with a relatively easy time. All trachs are placed as a way to have a secure airway. Some require this medical aid temporarily, others this is a permanent lifestyle change. Some require oxygen, delivered by a ventilator that is continually hooked up to the trach, while others only need humidification while sleeping (like a CPAP machine for someone with breathing issues while sleeping).
Today I wanted to kick off Trach month by giving a glimpse of a typical weekend day of our family…
Since C had been released from the hospital he has had 24 hour care. This means that there is someone awake watching to make sure there is no trouble with his breathing ALL day, and night. On the weekend that means the Mr and I tag team the watching — since we only have help through some AMAZING continuing care assistants 5 nights a week. Mr P is a night owl and I am a morning person, so on Fridays and Saturdays the goal is for me to be asleep by 8pm, 9 the latest, and will get up no later than 3 am.
Most weekends, thankfully, we are able to just watch C sleep on the couch, keeping things dark enough that he is able to stay asleep, but staying in an area where we can still watch tv and do other things that will help us to stay awake (Like write a blog about trach life 😉 ) During the weekends, while C sleeps, we also give him a break and do not hook him up to his humidifying machine, but use a little filter called an HME, or a heat and moisture exchanger, to make sure that his airway doesn’t dry out — think of that super dry feeling in your mouth when you first wake up – not fun -.
Once C wakes up for the day, around 6:30 am, it looks like a pretty typical day. We have breakfast and medicine, several suctions, we drop daddy off at work, we play inside, have tons of suctioning– or we might play outside if it’s not too cold, or too humid, or too wet– so basically if it’s spring or fall. We have lunch, and suction at least once through the meal. I watch C nap, suction, have a snack, suction, play some more, or do some errands all the while suctioning, and then go pick up daddy from work. Once daddy is home that’s when we start supper, medicine, and bedtime routine so that I can be back in bed to do this routine again for Saturday night to Sunday morning.
Anywhere we go there is always a suction machine with us, a loud, obnoxious, machine that makes sure our little man can always breath. This machine sucks out all the junk from the inside of his trach. A lot of this is mucous, and secretions that his body creates trying to protect his body from a foreign object, his trach, that is not “supposed” to be there. On a good day you may only suction every hour or two… but if there is any respiratory illness, or sometimes even teething, this machine is on almost constantly (another reason why someone always has to be awake)
So, although there are many things that we do that look like a typical toddler life, if there are events, or parties, or meetings on the weekends that we do not attend, please know that it is not that we don’t want to attend, but many times it is that we just simply can’t. There is a good chance neither of us have had more than 5 hours sleep.
And that is just a little glimpse of what our version of trach life looks like.
If you have made it to the bottom of this tedious post and are wondering how you can help, I would love to encourage you to join the Mom’s of Trach Babies- Global Tracheostomy Tube Awareness Week Facebook page to hear others stories and see more information specific to a trach, and maybe consider purchasing the Jamberry Wraps I have designed specifically for this week (Available in the US and Canada), with a portion of the sales going to Mom’s of Trach Babies to help with prizes designed with our trach kids in mind, as well as to help get trach supplies to those who need help getting them.