How to make your list
No doubt your medically-complex child has more stuff than all family members put together! Pre-made packing lists can help make your own unique list. To make your list think through your child’s routines during a typical day and write down each and all of the supplies you use. Then do the same not chronologically but by body system (GI, respiratory), and once again by tasks (feeding, suctioning, bathing), adding new items to your list each time. This triple check will help to catch things that may otherwise be forgotten. Lastly, check your list against your monthly supply order receipt and a visual inspection of your supplies at home.
Use these blank checklists to keep track of what you need, and save them for future trips!
How you organize is very individual. Is it better to have each family member manage their own items and suitcase, or do you have everyone’s hygiene items in one packed bag, all the PJs in another, or a bit of both? Packing cubes or large, clear ziplock bags (2.5 gallon or even larger) help keep things together and easily found. Consider bags that expand for extra space as you buy things on your trip. If you are taking a flight, keep an eye on the weight of each bag and redistribute as necessary.
If you need a go-bag, you probably have one already. If you don’t have a go-bag, you will want one while traveling. Put essential items for your child’s care for 12 hours in an easily carried bag that stays handy through your whole trip. Expand it for this trip to include a spare or two of each tube (G-tube, trach, ostomy wafers), your ICE form, a comfort item, and a higher quantity of the other essential materials. Keep this bag handy at all times; it can be a lifesaver.
Thoughts can race about if you’ve remembered everything, have enough, how you’ll fit it all, how you’ll find anything, etc. Have confidence in the comprehensive list you made and leave plenty of time to pack. You’ll do a great job! If packing is stressful put on some music, start early, minimize distractions, maybe even pack supplies way ahead of time to break it up. You’ve got this; fun in the journey can start with packing!
Items to keep handy
Handicap placard, battery pack for phone & tablet charging, scissors, sharpie, chux pads (they give you a clean surface and clean up messes), wipes; add your favorite items too!
Items with purpose
Bring an item that comforts your child during distressing or tired times; bring a favorite item that will help when having to wait; and bring items for outside (sunscreen, misting bottle, cooling towel).
Misc. things not to forget
Cords for phones and equipment (feeding pump), power strips, extension cords, laundry bags, lots of ziplock bags for organization and wet or soiled trash, laundry pods, and insurance cards.
Headphones can provide entertainment, solitude, and control over environmental noise; consider a pair for each family member. Consider giving each family member their own backpack to carry water, snacks, and entertainment devices.
Old phones or tablets can be preloaded with movies, games, and pictures for fun and don’t need a phone plan or data to access downloaded items (Netflix, Disney+). Other portable activities, snacks, reading books, etc. can make the trip more enjoyable.
First night tips
Chances are your first day of travel will be very full. Make the first night easier by packing everything you all need for that first night (PJ’s, hygiene, next day’s clothes…) in one suitcase or packing cube to prioritize getting a good night’s sleep!
Documents and papers
Update your in case of emergency (ICE), your medical information (allergies, Rx, Dx, PCP, etc.), and digitize this information so you always have access via your phone. Email it to yourself, make a google drive, or use an app like Lightning Bug, but be sure you also print it out and keep a copy in your go-bag/first aid kit, your glove box, etc.
Take a look at this shortened emergency contact tag, meant to be attached to a childs car seat or luggage.
Consider shipping items ahead
Would shipping items ahead to lodging locations be helpful, such as briefs, wipes, enteral feeding supplies, etc.? On the box include a supervisor’s name as well as ‘guest supplies’ for arrival on (date) for the (name) family. Add a tracking code to the package and when it arrives call the hotel to confirm and find out exactly where it will be stored for you so that upon arrival it can be found easily.