Trached and Traveled: The Trach To-Go Bag

New parents of babies who’ve had to have a tracheotomy are often overwhelmed. On top of a lot of information necessary to understand and make decisions about their child’s medical condition and treatment, there’s also a lot to be learned in a short time about caring for and changing a trach. For me, having finally demonstrated to the hospital staff enough trach knowledge to earn the right to (at last!) take my baby with a trach home, I was more than a little afraid to leave the house with her. When I did eventually venture forth from my home with her, I did so armed with two bags: one was a standard diaper bag and the other was a pre-packed trach “To-Go Bag” that contained everything I needed to ensure Mighty Z survived our trip to the Starbucks drive-thru.

Although Mighty Z, who has Congenital Central Hypoventilation Syndrome (CCHS), was eventually decannulated after being vented with surgically implanted breathing pacers, I have recently put on my experienced trach-mom hat again. My cousin’s baby had to have a trach due to Transverse Myelitis, and even more recently, a dear friend’s baby has had to have one as well. So, I have had to brush up on my trach skills again, and in doing so I’ve discovered that it’s another one of those things that’s like riding a bike–once you know the ins and outs of a trach, it is something you don’t really forget.

The Trach To-Go Bag is a bag that has everything in it to keep your child with a trach alive. In order to do its job, the “To Go Bag” needs to be pre-packed and ready to go at all times.

So what’s in a Trach To-Go Bag? Good question. The first step for a Trach To-Go Bag is, well, the bag. There are many to choose from, but my favorite is the Skip Hop Duo Double Deluxe, which is available at Buy Buy Baby.

As far as what goes in the bag, here’s my complete Trach To-Go Bag list:

• An extra trach your child’s size
• An extra trach one size smaller than your child’s size (the throat is the only part of the body that closes up in a matter of seconds–if your child’s trach starts closing up, it’ll be easier to get a smaller size in, and you want that)
• Trach ties
• Scissors
• Split gauze
• Spare exhalation valve for the vent
• Omniflex
• Swivel elbow (for right at the trach)
• Suction catheters
• Ambu bag
• 24 hours worth of your child’s meds
• Tape (I like cloth tape)
• Gloves
• Saline bullets
• Extra set of vent circuits
• Chap Stick (it sounds odd, but Chap Stick actually can heal the raw redness around the trach collar)
• HME (the artificial nose at the base of the trach)
• Extra pulse ox sensors
• Flashlight
• KY Jelly (for easier insertion of the trach (duh!))
• Q-Tips
• Hand sanitizer
• Portable pulse ox (I like to carry one that is small and clips on the finger)
• Stethoscope
• I’ve found that clear makeup bags are awesome for storing the above-listed items inside the Trach To-Go Bag because they allow me to see what’s inside each bag. A small index card with a list of the contents of each clear plastic bag is also sometimes helpful for finding items in a hurry. Finally, I liked to include a folder with sheet protectors, and in the folder I put information concerning my child’s disease, insurance cards, her med list, an allergy list, vent settings, emergency contact info, doctor info, etc. in case something terrible ever happened to me and I was unable to provide information needed by others to care for my girl.

The thing about the trach is that once your child has had one for an extended period of time, it no longer looks odd to you. In fact, to me it seems–dare I use the word?–normal. Caring for a trach and having a pre-packed Trach To-Go Bag will soon seem the same way. I promise.

Shelley Colquitt is the mommy of two beautiful girls, Lauren and Zoe. Her youngest daughter was born at 40 weeks.  As she was celebrating the success of the labor and delivery, her baby stopped breathing. Later, her daughter was diagnosed as having a rare disease that only 163 babies in the world had at the time (11 years ago). She had to learn to take care of a baby who had a trach and was on life support machines 24 hours a day.

Not only is Shelley busy with her two girls and works very hard to keep her youngest chronic medically complex child healthy, she also volunteers at a shelter for abused/neglected children and also volunteers as a teacher’s aid for children who are globally delayed. She writes about the ups and downs of dealing with a child who is complex, chronically and critically ill. Read her blog at http://confessionsofasleepdeprivedmomma.blogspot.com/

Leslie Osborne is an attorney and the mom of two gorgeous girls. She is a neighbor and friend of Shelley Colquitt. After reading Ms. Colquitt’s blog, Confessions of a Sleep Deprived Mama, Ms. Osborne knew that Shelley Colquitt had an important story to tell, and she offered to help her tell it better. Leslie says, “It’s Shelley’s story. She writes about those of her experiences that she feels compelled to share, and I help her organize and edit her writing with an eye toward fleshing out the details of the story.”