My heart goes out to parents with children who have a tracheostomy and/or rely on a ventilator for airway. We’re currently in the middle of that adventure and though there are some hard and taxing days I wouldn’t change my son being able to breath safely and well for anything!
Here are 5 bits of encouragement and trach life hacks we’ve learned along the way.
1) It will get better … but it’s going to be a hard road for a while.
For a lot of parents, a tracheostomy is a last resort we pray never comes and when it does we expect immediate relief.
But sweet parent, it might not happen that way. I’ve found it’s very common for children to struggle immensely after getting their trach. It’s a whole new ball game from intubation.
Our son experienced multiple blue spells and codes during the first few weeks after the tracheostomy. There was one day when I literally said goodbye because the issues where so mysterious and complex; they were talking about giving him paralyzers so his body would relax and get his carbon dioxide back into safe numbers. It was horrible.
Here’s what needed changed: vent settings especially the PEEP needed raised, frequent suctioning, and most importantly, our son needed a longer trach.
That day I thought we were losing Uriah? It was the same day ENT finally did a scope, discovered he needed a longer trach, and it proved to be the “magic” we needed to give Uriah some relief; the trach wasn’t long enough to keep his bronchial open (TBM).
Of course, every child is unique and each reason for a tracheostomy is different. I’m just sharing what helped us overcome those hard, early days of #trachlife.
2) Listen to the doctors … but listen to your gut most of all.
You will come to know your child best; doctors specialize in medicine and diagnosis’ while you specialize in your child. We highly respect our medical team’s opinions but I’ve discovered that no one knows our son like we do!
I have woken up in the middle of the night, listened to the way Uriah was breathing, and known he was coming down with a sickness before it ever presented itself.
Your gut, instincts, and advocacy are vital in how well your child thrives.
And all the good doctors will tell you so!
3) Learn to go solo
When we first came home from the NICU, trach and tie changes were a two person job that involved sweat, nervous anxiety, and preparation.
Only when Uriah showed us he was stable and only when we were comfortable did we learn to change trachs solo. (If your child does not tolerate trach changes then do not make things worse by going solo!)
But if your child is stable, tolerates changes well, and you have a game plan in mind, it’s a good skill to master. Things happen and you might be by yourself when you need to do a sudden, unplanned trach or tie change.
- Practice changing the ties while someone is close by in case you need help.
- Always have your new trach, ties, padding, wipes, and other tools ready and laid out on something sterile and clean before you start.
- Train your child to sit still. It won’t happen immediately but eventually you’ll learn. You know how hard wrestling a toddler is to change a diaper? Imagine trying to put a piece of important plastic back into their tiny neck while they try to escape!
4) Suction, saline, and tie padding
You’ll learn the words and all the tricks associated with them! Here are a few tips our NICU nurses and fellow #TrachParents taught me.
- Do not suction too deep, it will cause irritation, damage, bleeding, and soreness.
- But don’t be afraid to suction! Your little one needs to breathe and that means suctioning until the goop is gone (or do a trach change). One trick is to squeeze a few droplets from a saline bullet into the trach to help clear any plugs that may have formed. But caution! Only a few droplets and suction immediately as you don’t want to drown your little!
It’s very common for the sensitive skin beneath the trach ties to break down, turn red, and even open into sores! Thankfully, Uriah has never had an issue with that and I think it’s partly due to being faithful in changing his ties and keeping clean, dry padding underneath. We used to use Mepilex to wick away moisture but now we use 4×4 Split Sponges cut in half and love it.
5) Nursing can be helpful … but do what’s best for your family.
Some NICUs will give you the option for home nursing; most likely, your child will qualify for so many hours a month and you can choose to use the hours in the day or nighttime hours depending on the availability of nurses.
And while some parents need nursing (because their child is unstable or highly care intensive) know that you do have the choice.
We chose not to have nursing and it was the best decision for our family. We’re a introverted couple who enjoy family time; we never felt comfortable with the idea of someone being in our home while we were sleeping or working. There were too many variables for us to consider nursing an option. (We did try nursing for about 2 months after being home for 5 but it ended up not working out and that’s okay! Our nurse was awesome but due to some insurance issues we moved on)
So, how do we do it without nursing?
- We take “night shifts” when I am responsible for any weekday night alarms or cares that need addressed and my husband is responsible for weekend nights.
- I learned how to drive solo by taking it slow, knowing my route, keeping the suction in the passenger seat while hooked up to Uriah in the back, and learning how to listen for secretions. I only drive solo when running errands in town; I’ve never attempted a long-distance drive.
- Create a routine that works for your family! Find ways to move your child around, give them sensory input, play, and activities! Once you find your routine life gets so much easier.
- If your child tolerates it, try using a baby carrier! It’s super fun; the only issue is that the vent and equipment can be cumbersome and super heavy. It’s possible to buy backpack straps for your ventilator and a smaller, more portable suction.
- Organize, organize, organize! Once you find a place for all of the medical supplies life get’s so much easier!
- We use a small utility cart from Sam’s Club to carry all of Uriah’s home medical equipment (vent, suction, pulse ox, water bag and heater, Ambubag, and feeding pump). It’s much easier to move then the large vent stand your DME will set you up with.
- Order a medical grade stroller from whoever supplies your therapy services. I cried when I originally ordered Uriah’s Zippy Stroller (because it looked medical and I wanted something normal for once!). But I couldn’t live without his stroller — it keeps his back aligned and in good posture, it’s super sturdy and holds all his equipment, and I can take it anywhere because the wheels are large. It is heavy and bulky but worth it! (If you cannot order a medical grade stroller then try a double stroller!)
Trust me, it will get easier. You’ll need time to find out what works best for your family.
That’s it! Please, remember that I am not a medical professional so always consult your medical team. I’m just a mama who wants to share what has made our trach life so much easier!
Please let me know how you and your little one are doing? Trach life is challenging and sometimes scary but learning from each other helps lighten the load!