Traveling with a special needs child

Traveling is stressful but even more so with a special needs child.  There are so many pieces of equipment and so many supplies that have to be taken, not including all of the regular things that have to be packed when traveling.  Plus, it is always a challenge to set the room up like a mini ICU.  We have always been of the mindset that we would treat Noah just as we treat our girls, including letting him travel.

I remember the first trip we took after he was discharged from the hospital.  We went to the beach during spring break.   I packed enough for a whole month but I wanted to be sure we had everything we needed.  After all, there was no running to Wal Mart to get HMEs or circuits.  We also had to figure out where he would sleep and room arrangement.  That trip was a learning experience for us.  We had so much fun and it helped to know that traveling with him would be possible. 

I have put together a few helpful tips for traveling with a trached/ventilated child.  I will also explain how we set the room up for Noah to sleep.

Supplies--When we first went to the beach for a week, I packed a suitcase for the trach supplies, one for vent supplies and one for clothing.  Noah had 3 suitcases!  After that trip, I realized it was a bit excessive so now I've condensed everything into 2 suitcases.  One for supplies and one for clothes.  We change circuits and the trach weekly.  I start the packing process by packing the vent things first.  (You could make a list of everything you need for circuit changes but I just go through the process in my head without using a list).  For a week, I usually take 3 of everything.  I pack 3 water bags (we usually use 2 in a week), 3 circuits, 3 water chambers, 3 omniflex, 3 swivels.  For trach supplies, I pack a lot of trach ties because I never know when we will be swimming.  I usually plan for 2 a day, which is 14 for a week.  I pack the cleansing soap, nystatin powder, 4 trachs, scissors, a trach kit for every day plus some extra gauze, about 4 bags of suction catheters and a baggie full of saline bullets.  I also take an extra suction canister and tubing.  I pack about 4 caps since he wears them all the time and they tend to get lost sometimes.  Plus, they are small and fit in the suitcase easily.

Equipment--We are very careful when packing the equipment.   We take our time to make sure we have everything.  The vent gets packed in its travel bag.  I am extremely careful with the CO2 monitor.  I wrap it in bubble wrap.  The sat monitor goes on top of the CO2 monitor and they have their own bag.  The suction machine has its own bag.

Electrical Cords--Every piece of equipment has a cord.  We have a ton of cords so we have a designated "cord bag".  Its a duffle bag that came with our set of luggage.  The first thing in the cord bag is the vent stand.  It's flat so it goes on bottom.  Then as I pack each piece of equipment, I put its cord in the cord bag.  I pack up the CO2 monitor and then take the cord and put it in the cord bag.  Same thing with the sat monitor.  We also put the vent heater in this bag.  The vent battery goes on the vent and the cord goes in the bag.  We also put our bungee cords in here too.  We make sure to take our surge protector.  We purchased an octopus like protector that has a lot of room for the cords to plug into.  We always take a long extension cord just in case. 

Vent batteries--We have 2 vent batteries.  The night before we leave, I plug everything up and let it all charge if needed.  I keep one vent battery in the back pocket of the car and the other is on the vent.  We went to Disney a couple of years ago when Noah was almost 2 and we carried 3 vent batteries.  On Noah's typical vent settings a vent battery will last 3-4 hours.  We took 3 because we wanted to be sure we had enough battery to last all day if necessary.  We have found that the higher the settings, the less time the battery lasts. 

Sleeping--We have found it easier to let Noah sleep on a blow up bed.  We bought a twin blow up mattress and I take a twin sheet with lots of blankets.  Upon arriving at our destination, we move the furniture around if needed.  All places are different but we usually have the same setup.  We put the blow up bed by our bed and use a nightstand for the vent.  The heater goes on the floor, as well as the sat monitor.  If the nightstand is too tall for the circuits to reach, we use a small upside down trash can or a small stool.

Taking equipment to attractions-- One of the biggest challenges is trying to figure out how to carry all the equipment to different attractions.  When we went to Disney, we took our large pack and play stroller.  When we went to the beach, we took a wagon.  The wagon was too hard to pull in the sand so I ended up getting a large beach bag in which to put the suction machine.  We have recently returned from a trip to Washington DC.  We really didn't want to take the large stroller, especially on the Metro so we had to come up with an alternative.  We ended up using a collapsible luggage cart and purchased a lot of bungee cords to secure the equipment to the cart.  Instead of taking our large stroller, we purchased a small, cheap umbrella stroller for Noah to ride in when he got tired.  When he wasnt using it, we strapped it to the luggage cart.  This worked extremely well.  The only downside was when we had to undo everything to get through security. 

A few extra tips--I always keep a spare circuit in the car for emergencies.  I use a laundry basket in front of Noah's seat in the car that holds the vent in place.  I keep his nebulizer equipment in a ziplock bag that I can just grab and put in the suitcase without unpacking it. I always have Chris double check the supplies/equipment to make sure I packed everything. 

As you can see, traveling takes a little extra planning but with careful packing we have never had an issue with not having anything we needed. 

Here is an example of how we set the vent up when we went to the mountains during spring break.  We try to hang the water bag but if there's no doorknob or hook then we just prop the water bag in front of the vent.  Here, the table was just the right height but if it is too tall, we place the heater on a small overturned trash can or a small stool.  The sat monitor is not shown but we put that on the floor by the heater.  I always take his current size trach and one smaller to put next to the ventilator. 

Here is the luggage cart with the equipment.  This worked very well when we went to Washington since we did a lot of walking and riding the Metro.

This was taken a few years ago at a beach house when Noah still slept in a crib.  There was a handy hook on the wall that I used to hang the water bag.  We used a stool because the circuit wouldn't reach from the table to the crib.  (Please note that we did not take a crib with us.  There was already one at this beach house).  The extra trachs are behind the ventilator.

This is the setup we used when we went to Disney.  We cut a hole in the pack and play to accommodate the vent circuits.  The vent is not shown in this picture but it is on a table on the right side.  (Please note:  We cut the mesh horizontally but realized that cutting it vertically would have made it easier to drain the circuits of water.  I had to pull unhook Noah from the circuit and pull it back through the mesh to drain the water.  This was a huge pain.  If we had cut the mesh vertically I could have just raised the circuit up to drain, rather than having to unhook him).

This is our very first beach trip after Noah was released from the hospital.  He was still small enough to sleep in the pumpkin seat.  As you can see, the vent is on its stand on the nightstand.  The heater is below on an overturned trash can and the water bag is propped up in front of the vent.  This is the same setup we use now except instead of the pumpkin seat, Noah is on a blow up mattress (as shown in the picture above).

The setup remains pretty much the same wherever we go.  We usually have to move a lamp off of the table or sometimes move the bed over to accommodate the blowup mattress.  There is usually a nightstand but once we went to a volleyball tournament and stayed in a motel that did not have one so we used a sturdy chair on which to put the ventilator.

We have learned to become very inventive.  It does take a little time to set everything up but with patience and imagination, it can be done.