I´m in a Facebook support group for Trach Moms, and today a mom shared about her first experience going out with her trach baby and her husband and how overwhelmed she felt. It wasn´t a good first attempt. She even felt that the guests would avoid her and her baby and ultimately ended up in the laundry room crying.
See, having a baby with this kind of special need means you can´t travel “light and easy” anymore. The diaper bag becomes a distant secondary thing and your trach gear becomes what you´re really mindful about. We need to be sure we´re bringing:
- A sterile extra trach for emergency changes (ready with a trach tie & lubricant to avoid injury when inserting it)
- A bunch of split gauze (Since Aly has a little hole in her neck where the trach goes, secretions come out from there—That hole is called stoma— The gauze is to make sure her skin is dry, avoiding rash or infection)
- A bunch of non-split gauze, sterile Q-tips & saline water bullets (to clean the area frequently; Quadruple the amount in case of a cold. Crying adds extra trach cleanups as snot usually comes out her stoma instead of her nose)
- A suction machine to help pull secretions out. If you have a stuffy nose, you can open your mouth, but Aly’s got her trach —A 2.5 mm diameter straw through which she gets air into her lungs— Technically If it gets clogged, she wouldn’t be able to breathe.
- A trach deep suctioning kit (in case she’s not being able to cough out secretions and the suction machine’s tip isn’t doing the work)
- A pulse/oximeter (to make sure her oxygen levels are higher than 90% and her heart isn’t beating too fast, otherwise it means she needs suction, repositioning, or a trach change)
- An HME (Heat & Moisture Exchanger) A little filter she wears when she naps so her trachea stays moist. Dryness means thick secretions, leading to clogs) We have filters in our noses that warm/clean the air we breathe. When she naps, she doesn’t wear a cap so it means the air is as cold/dry/dirty as can be.
- An ambu bag (in case she was to ever need support with oxygen on our way to the ER)
This needs to come with us wherever we go, even if it’s a quick supermarket run. If we travel overnight there’s other equipment we need and we multiply the supplies times the days we´re staying.
Fortunately, she doesn’t have a gtube anymore, but when she did we needed to bring: A gtube pump, which later changed into a large syringe where you put the formula or food mix, Gtube extension that connects the syringe to her tummy, more split gauze.
All of this on top of the diaper bag (Diapers, wipes, Desitin, clothes, etc.)
(We need all of this to go out. The suctioning machine weighs 9.3 lb)
After two months in the hospital, and lots of training for both my beloved Alvaro and myself, Aly was ready to come home.
All on our own now (well, in our case we have the blessing of having my sister Maria Renee, pediatric Hospitalist, and brother-in-law Omar, Pediatric Intensive Care Unit Director, as support. That will be another blog post) and I was faced with the realization that our routine as a family was changing drastically.
Sticking to the mobilization part, I recall getting to the conclusion that life needed to continue.
I thought about sports kids’ parents who wake up extra early, whip up a healthy breakfast, pack up equipment, and drive their kids to practice or tournaments. I thought, if they can do it, we can too! We’re Aly’s team and she’s an Olympic medalist in the game of life already. She goes to school like kids her age but she didn’t have the same starting point they had. She’s been learning to survive and live from day one; she had to learn how to eat, drink, how to breathe, she’s gone from surgeries to scans to needing blood labs regularly to visits to the emergency room etc.
If she’s crushing all of the above trials and still has a good attitude, I was not about to confine myself to the house and prevent Aly from seeing this beautiful world, meeting people, having fun and doing the regular family activities just because putting things together to go out was a hurdle. I said: “Family, this chapter in our life story will be titled: PACK MY GIRLS AND GO!”
I was on a mission: How can I pack in advance the things I need (at least most of them) to make going out quicker?
I made emergency trach bags (trach, ties, gauze, lube, gloves, sanitizer, and Ambu bag) to leave in our 2 cars, I carry an extra trach with a lube packet in a ziploc bag in my bag, I prepared a diaper bin and left it in the trunk, a gtube supply kit for the trunk, and a diaper and trach bag to go (one I bring down to wherever I’m going along with the suctioning machine)
It took a lot of trial and error. I started taking short trips around the neighborhood, then further to the supermarket, gas station etc. Priscilla (beautiful blessing) was a crucial part of the training as well, she was game for the process and whenever I’d say “Pack my girls and go” she would help grab the suction machine while I carried Aly into her car seat. She’s been an OUTSTANDING sister (that too has to be another blog post) she’s learned to suction her sister’s trach and even knows how to change it in case of an emergency.
Trips became easier as we went and now it’s second nature. We go everywhere, travel and do our normal routines.
As per people avoiding us…we’ve never felt that. Thank goodness. I guess became so used to going out and helping Aly with her needs that I’ve had enough space in my mind to ponder about the fact that whenever there’s a person with special needs around, the natural tendency would be to think “don’t look at him/her so we don’t make them uncomfortable” actually making it uncomfortable. Instead, I opted to tell people up front. I quickly explain Aly has a trach to help her breathe. Everyone has been pretty cool about it: They’ll ask why she needs it, if she’ll have it removed, and that’s it. The conversation carries on normally. A lot of people say they hadn’t noticed!
As we were having breakfast today I told my family how proud I am of them, how despite the many things we go through with Aly’s need, Alvaro manages to be the #1 salesperson at the dealership, Priscilla is part of her school’s theater group, band, and orchestra, Aly’s going to school learning English, Spanish & Sign language, I’m doing really well with my voiceover career and I´m seeing my songs prosper (Especially on Tiktok where a few of my videos are viral) So I guess we’ve officially entered a new chapter. I’ll call it: THRIVE!