The only spontaneous travel that happens anymore with our special special involves a 9-1-1 call. 

Sounds wild, right? It’s not meant to be dramatic. We just know better now after 6+ years as a family with a medically fragile child. And when you know better, you can do better. 

“Better” means having a plan for when she needs to leave the house. More like a cascade of checks and assignments to ensure our special special is ready to be on the move. It didn’t come about because we want to be extra or because anyone is a type A personality. The plan takes shape because we learn the rhythms of our girl and what she needs to be successful while out and about.

Get Ready for What?

Well, we have to "get ready" to do just about anything that isn’t in the house. Sometimes, many of these same things need to happen whether she travels across town or across the house.

We are not talking about something as extensive as vacation here. Not even an over-nighter, although many of these same checks would translate well. The ideas in this post are meant to address the caregiver that has been flustered to the point of exhaustion because there is just so much to do for your special needs, medically fragile, or disabled kid to be out of the house that the idea of leaving is overwhelming.

Been there. Not fun.

When I finally started to tackle the notion that we could be well prepared for something as routine as a doctor visit or as spontaneous as a walk outside on a pretty day, it took some doing. Mental and physical. And then it took some time to make it feel smooth. But eventually, we have been able to arrive more-or-less on time, be well prepared for activities (planned and emergent), and better able to recover from an outing without totally falling to pieces. No longer does a planned outing destroy me the way it did, nor does it put Natalie behind on anything she needs. Feels like a win.

And with that, Natalie and the crew would like to invite you to see what it takes for her to go out for a stroll around the block, to church, a doctor’s appointment, or even head to the pool. Come on! GRWM!

The Preamble

Since there is hardly a pick-up-and-go option, we start most outings at least one day prior. Sometimes a week out or more. Here’s how a planned outing like a doctor's visit goes down:

Consult the command center. Natalie has two big white boards, and she gets her very own planner as well. It’s a low tech paper planner, and it is KEY. It needs to be an hourly planner. Big, unstructured blocks won't do, trust me.

Tip: This kind of planner is also very helpful when first establishing or tweaking a daily or weekly schedule with a new medicine, therapies, treatments, and the like. We have also used this specific planner to document certain activities at doctors' requests. The planner can serve as an activity log, and trends can even pop out at a glace. I cannot recommend this enough! Even if just training your own brain.

The whole team uses the command center on the daily. I will pencil in all appointments and key events as soon as they’re scheduled. Most of the time, I schedule things standing in front of this command center to make sure there are as few conflicts as possible. Everyone on her team knows to do the same. It’s not fancy, but, boy! it keeps us all on the same page.

Once we have an appointment on the books, it’s time to do a few checks. 

• Do we have two adults available to accompany Natalie? (usually mom and a nurse for doctor’s appointments)  
• Do we need to schedule an exchange for oxygen tanks? 
• Do we need to reorder meds prior to this trip/outing? 
• Is there anything that needs to be rescheduled/rearranged?
  • For example, Thursday morning therapy is typically interrupted by the quarterly trach clinic because Natalie's doctor can only see his patients on Thursdays. So we shuffle.

One of the most important things for me to see on the paper planner are the brackets to block off prep and travel time. Since we live a good 45+ minutes away from the medical epicenter of Natalie’s universe, it's super helpful to visualize this, especially when scheduling around routine things on that day like breathing treatments. This helps everyone prepare for a successful day without missing a beat.

The tank exchange and med reorder are the items that can take the longest to get checked off. We have learned to NOT do these specific things in a one-business-day panic. It’s also courteous to give a therapist time to rearrange their schedules to accommodate us, so we try not to throw a last minute wrench in their schedules if we can help it.

The Staging

The day before is vital to my sanity.

Let me save you the torture. Making a day before or staging checklist might be THE action step to transforming your peace of mind around an outing with a disabled, medically fragile and otherwise special special child.

Note that some of the following list can only get done if you’re NOT “on duty” with a full care, medically fragile kiddo. Grab some help, delegate, or take advantage when someone else is tending to your special special.

The important part is that these can get done at least a little ahead of time. Making the tasks on this list part of the day-of itinerary, for me, always felt stressful and made my day so chaotic. If something can be done ahead of time, do it!

• Gas up and clean out the van, restock disposable items and seat pockets
• Load the wheelchair, wagon, and extra oxygen tank(s)
• Make sure the back up ambu bag is readily accessible
• Ensure mobile equipment is charged up and working properly and replace/restock disposable parts
  • For us, this includes suction machine, pulse ox machine, ventilator, food pump
• Check weather and travel conditions (is there STILL construction on that stretch of road - ugh! add ten minutes to the brackets in the planner)
• Pull out the (1) GO BAG, (2) the rescue med bag, and (3) the trach bag (always hanging right next to her bed) to make sure they are all properly stocked; plop the GO BAG in the middle of the floor as a visual reminder
• Prepare and label any meds that need to be given while we are out; pack a water bottle for mixing/diluting meds on the go

The Day Of: Part 1

Ok, it’s time, and everyone is aware! Alarms, daily activities, and any other considerations will be top of mind and adjusted for as we move toward go time.

We like to travel fresh off a breathing treatment, or have one as soon as she returns to reset. Those take about an hour to run through, so the day of an outing can quickly get busy. A good reason to have a day before list. Justsayin.

The food pump is hung in its special unicorn backpack with an ice pack so we can grab it at go time.

We will do a double check of the GO BAG, add the red rescue med bag and blue trach bag, travel battery for the vent, power chords, and any other necessities.

Appropriate outdoor clothing, torso brace, and AFO "boots" go on as we get close. Just like with any kid (and me too, let’s be honest): potty break or diaper change right before we leave.

Load it Up: Part 2

I will typically set an alarm that gives 20 minutes to get all the gear in the van, and to get Natalie herself loaded up. To start, we move the things she uses and can be disconnected from to the van. 

• Trach bag and rescue med bag in the GO BAG.
• Power cords and extra vent battery in the GO BAG
• GO BAG, food pump backpack, portable suction, pulse ox machine move to their travel spots in the van
• Ventilator is taken off the heater and put into travel mode; then connected to the portable oxygen tank

Next in is Natalie and the things she cannot be disconnected from

• Since she is currently on the ventilator and oxygen full time, it’s a two person job to get her carried and walk out to her car seat. Three is a nice luxury. One person carries her, the other holds the ventilator and oxygen close behind. That third person is the "movement manager" (door holder). A great job for big sis.
  • Currently, this is a better option than using the wheelchair to load up because it takes so long to break down and pack the wheelchair. Plus, it ends up being a double transfer. Fortunately she is still light enough to do this (with extreme caution). We are looking forward to the day that she has a van in which her wheelchair can roll up and be locked down without having to do a separate set up and transfer. Big things like this are a grueling process to get approved, ordered, and put in place. Oh! And it is so expensive out of pocket that your head will spin. One day… but currently, this method works for us.
• Buckle her up
• Reconnect and arrange the final pieces of her equipment where the person next to her can reach everything
• Off we go!

The Arrival and Wheelchair Set Up

Now that we’ve arrived, it’s time to set up the wheelchair and get her in it. This may seem pretty simple, but it’s akin to being part of a traveling carnival team. It’s a bit more involved than just getting the kid out of the car seat and strolling through the doors. 

I’ll refrain from complaining too much about handicap accessibility in parking lots (for now). Suffice it to say, we gratefully pull out the blue princess placard and find some space to get this done:

• Pull out the wagon
  • About the wagon. At this point, it feels like a necessity for our special special. When graduating from the diaper bag and stroller era, you lose storage, and normally that’s fine. In Natalie’s case, her necessary items INCREASED as she grew. It’s a pretty smart set up, if I do say so. But I’m telling you, there is just no way to maneuver around if we tried to strap on and carry all the items she needs all the time. It doesn’t make us helpful to do things like suction her, tend to medication or the possible seizure management. I’m convinced: we simply need the wagon to be out and about successfully.
• Set up the wheelchair (cue the NASCAR pit crew sound effects)
• Transfer her from the car seat to the wheelchair and buckle up
  • Just like getting from the bed to the van, it’s a two person effort to manage the rotation with the oxygen and ventilator lines from the car seat to the wheelchair.
• Outfit the wheelchair with ventilator in its bag, oxygen tank in the clip on oxygen bag, food pump, pulse ox
• Everything else in the wagon: GO BAG, suction machine, back up oxygen tank(s), and anything else that keeps our hands free to push, pull, open doors and tend to our girl.

I like to allow another 15-20 minutes to unload and set her up in the wheelchair before we consider ourselves truly “arrived.” 

Pro tip: when you get to where you're going, find an outlet for the things that need some juice before the return trip.

The Return Trip

Keep an eye on the time! Even though we get to be (or have to be) out of the house, the special special itinerary is what it is. You have to account for it without dropping the ball on all the other things your kiddo can’t skip, even for a special occasion. This includes time sensitive medications, your finite supply of portable oxygen, food and water, etc.

The brackets in the planner help me visualize this concept and account for all of that in the return trip as well. We have to estimate how many regular agenda items will occur during the trip, going and coming.

We can administer meds, feed her, and have her wear glasses and orthotics easily while traveling and being out. We try to get back to home base for other things like breathing treatments. That will reset Natalie in her most critical area, and keep us from bringing even more machines and the kitchen sink. If we can wiggle the timing on an activity at home, we opt to do that and not add extra burdens to the traveling process.

One of the trickiest things to overcome is a diaper change in public. Doctor’s offices are the easiest because exam tables in a private room work well for this. My advice: plan on this as a pit stop if you are headed to a doctor's appointment. Public restroom changing stations are not set up for the circus or the size child we’re bringing. Plus, ew. The back of the van will work in a pinch. Account for repeating several steps listed above, getting her in and out safely, and laying down the storage area in the van to accommodate this. Of course it can be done; just be aware and maybe pack a mat or blanket and a pillow for the possibility of the back seat or floor area diaper change.

The Walk Around the Block

Sometimes, "getting ready" is not quite as involved and structured. Some days, we just want to add a bonus activity to Natalie’s day. How about a walk in the neighborhood? 

We still have to do several things listed above even if driving away from home in the van is not involved. Get her from the bed to her wheelchair, put the ventilator and oxygen in travel mode, hook up the monitor and feeding pump to the wheelchair, carry or manage to stow the suction machine, and hang the trach and ambu bags on the handlebar. It’s still a hefty set up. Typically, it’s just a matter of time management and staying close enough that we don’t have to take every single emergency and backup item. But, of course, you have to take what you have to take.

Getting out is a treat to be sure. Exploring outdoors, "racing" sister on her scooter, and simply doing something other than the same 'ol, same 'ol is good to incorporate. When you have a good system, it makes it an option you can say yes to without so much stress.

Noteworthy was this past Halloween! It was the first time she was really set up well enough to actually GO trick-or-treating as a big girl. And it was magical! Certainly a snapshot of why you take the time and troubleshoot what success can look like.

The Good, the Bad, and the Ugly

I can recall only two times we were actually turned away because we arrived after a grace period for a doctor’s appointment. What a demoralizing experience! To go through all it takes to leave the house, actually get somewhere in one piece with everything you need,  just to then be told that you’re going to have to run this marathon again? And because the reciprocating party needs to move on, or worse: can’t be inconvenienced? Cue the hot tears of defeat. Then conjure up all sorts of dragons that an overstimulated, under-rested mama bear didn’t realize she could display in polite society.

Oops.

But I know those things happened because of me. Poor time management and too many things to do in not enough time allotted.

For a long while, even if we did happen to make it on time or within a grace period, it wasn’t pretty. Always stressful, overwhelming, a crash landing at best. For many years, we did all this with big sister in tow with all her needs as well. It is no small effort to be anywhere with your special special. The worst of it was that I - the adult, the caregiver, the responsible party who was supposed to be in charge here - always took longer to recover than I'd like to admit. 

Chaos came to a climax on September of 2020. We were going to church, and I didn’t give myself enough time to have myself and Natalie properly ready. I certainly didn’t have a two day prep template ready to execute. I forgot her rescue meds. And sure enough, we are away from home, in a new, noisy, public place and she started to have seizures.

It was the longest car ride home. I felt wholly inadequate for my sensitive and precious child. This is the kind of thing that could really really hurt her, and it was due, in part, because I wasn't ready. It was the taser that shocked my butt into gear. I had to be better prepared for getting out.

This is the reason I write this now. It is for your sanity that I want to lay out our process, years in the making. Make it your own for your special special situation. If it’s not working, tweak. Back up the timeline and give yourself more time, delegate more things, use that magical planner and/or the whiteboard, and put in routine checks. And for goodness sake, give yourself some grace, too. This is harder than anyone NOT doing it can appreciate.

No one and nothing is going to be ready “at your convenience.” You have to inconvenience yourself to make life happen for your special special. Hear me, that is not a complaint. It's a responsibility and a privilege to be a part of this special special experience. At the same time, it absolutely does take extra effort, planning, and time to accomplish. But as always, your extra effort is worth it for the quality of life you create for your special special and yourself (your sanity gets a say in this, too, remember).

Success in sharing this would be for you to replace chaos with more confidence. I would be delighted to know you can leave the house more prepared and experience less stress from an outing with your special special.

Perhaps you can even make the time and space for a nap.

Ha!

Make it a daydream instead.