Going Out with a Tubie
New or Seasoned
One of the most stressful new experiences with our son was going OUT...
even if it was just going to be a few hours.
We looked like we were moving away from home, quite literally.
- Multiple bags
- extra syringes
- extra formula
- snacks for him and his sisters
- all the creams and tapes
- extra extensions
- Blankies, toys, etc.
You name it we had it not only for our older children who one was still in diapers, but our new "Tubie" who had this new device that we were finally comfortable with taking care of at home but God forbid we had to step foot out our front door.
My Husband hates packing a whole bunch of items with us anywhere,
He has PTSD and that just makes him a little (or a lot) OCD.
Clutter just sends him to the moon and his mood soon follows suit, and we would have to go home early for him to decompress before he shuts down completely.
Something had to change!
My goal was to attempt getting us out of the house with the least amount, but still everything we may need in a feeding tube emergency.
We got a an small emergency kit from our hospital after surgery.
I insisted; since we live almost 2 hours away from a hospital capable of helping with his tube, and in Montana you never know what the weather will do so that trip could take a lot longer in the snow.
But I added to it and now it all fits in the diaper bag, or even a big purse.
And my 6 yr old daughter can even find what we need this way!
Keep in mind some children have trach's, colostomy bags, multiple other sites/needs to work with and you will need to adjust your packing accordingly to fit your needs,
This is just for 1 Mic-key kid who can eat like a 9-12 month old by mouth.
Nico's Kit
- 60ml piston syringe
- 14mm foley catheter
- 12mm foley catheter
- 1 old, sterilized mic-key
- 2 sheets tagaderm
- 2 250ml bottles formula
- KY jelly
- small bottle water
- 1 tube nystatin/mupriocine
- 1 tube calmoseptine
- wipes
- 4 diapers
- 1 complete outfit weather compatible
- 1 extension
- 2 nutragrain bars
- 2 rice husk snacks
- 1 5ml syringe capable of deflating mic-key balloon
- 4 sheets gauze
- Small hand sanitizer
- Chew tube or nuk brush
**he usually has a lite jacket on or winter coat, and brings one small toy with**
This all fits in my diaper bag which is a Mrs. Smith bag with a zippered insulation spot and messenger style strap.
This works for us much better for short and long trips.
Longer trips: we would add enough food to last the days we are gone
PLUS an emergency 2 day cushion,
on top of the pump/pole/charger,
and more diapers and clothes.
We have also learned to request that family members get a cheap highchair and Pack and Play.
So that we don't have to pack all the medical supplies as well as these bulky items.
This has been agreeable with all of them thus far without issue,
and we thank them for helping us keep Nico safe.
Streamlining your packing can save you a lot of work and time as most of these supplies can stay in the diaper bag at all times.
Happy Travels Super Tubies!
Let's get these amazing kiddos out into the public!
**I am not affiliated with Mrs. Smith company in any way, nor am I being compensated for this statement**
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