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. 

Trach Myths

1.  If your child has a trach they cannot talk--This is not necessarily true.  The trach can interfere with speech but there are some things that can help with this.  The PMV (speaking valve) allows the air to be breathed in through the trach but back out of the nose. The cap completely closes off the trach and the person is able to breathe the natural way.  It took Noah 2 years (yes Years) to get use to the PMV.  He hated it.  We would put it on and he would scream.  One day while at the beach we popped it on to show everyone how he screamed while wearing it and miraculously he did nothing.  He tolerated it and even began making noises.  I found that the PMV dried him out terribly and we had to be really careful to prevent plugs  (this is where the trach becomes plugged and no air gets in or out.  It is dangerous for trach patients).  Shortly thereafter we tried capping him.  The first try was disastorous.  He also hated it.  But a few months later he didn't even realize we had put it on him.  Now he wears it any time he is not hooked up to the vent.  It is a miraculous little invention.  Who would have thought such a little piece of plastic could be so important and amazing.  Noah did learn how to make sounds and even could say a few words without using the PMV or the cap but his voice was very soft and he only said a few words.  So, even if one doesn't tolerate the PMV or cap, it is still possible to vocalize around the trach.

2.  Your child can never take a bath or shower.  They must be spongebathed--We have always given Noah baths.  As a baby, we used the baby bathtub.  Now he sits in the big tub. Before being capped, he always wore his HME in the tub.  Now we use the cap.  I keep the water shallow and let him splash to his heart's content.   I have him hold his head back and rinse his hair. 

3.  Your child cannot swallow with a trach--Depending on the diagnosis, this is not necessarily true.  A lot of trach babies have problems with aspiration but no trouble swallowing. In Noah's case, he cold swallow but after doing a swallow study, we found that the possibility of his aspirating was high.  Because of this, we had to thicken all of his liquids.  He had many swallow studies and we did vital stim therapy for about a year (this is where electrodes are placed on his throat and a small current is used to stimulate the throat).  Finally, after 2 years he passed his first swallow study and showed no signs of aspiration. 

4.  Your child cannot swim with a trach--We live in Alabama.  The summers are brutal and humid.  It is impossible to do anything outside for any length of time without water being involved.  We go to the beach every year for vacation and sometimes go several times throughout the year when it's not hot.  Swimming is a huge part of our lives.  Because of the trach, there is an open hole that leads directly to the lungs.  We have to be very careful to keep water out.  At first, we used HME's then graduated to the cap.  When Noah was a baby, I would put him in his baby float and keep the suction handy.  He was content to sit in that and float around.  Now that he's older, it's becoming more of a challenge to keep him safe in the water.  This past summer we went to an indoor water park for a week.  His favorite ride was the lazy river.  We were able to sit him in one of their double floats and he was able to enjoy the water without being submerged.  They had a huge kid area that was only about 2 inches deep.  There was a huge climbing structure that squirted and dumped water.  They also had a big regular pool.  We just carried him around in this one.  He actually did fall face first a few times and scared me to death, but he came up laughing and since he was capped there were no issues.  I made sure to keep the suction machine close at all times.  We also purchased a small life vest, which provided extra protection.  The trach was hidden behind it and I think that even when he fell face first, the trach never got in the water, just his face.  I also kept a swim shirt on him and tucked his trach (he has the longer bivona flex) underneath.   I remember once seeing a picture of another CCHS child in the pool and he even had his ventilator.  They just had the ventilator sitting by the side of the pool and he was in the shallow end, circuits and all.  This inspired me and I vowed to allow Noah to have the same experiences as his sisters.  Every child is different and doctor's should be consulted before trying any of this.  I am in no way advocating that every child with a trach should swim.  I'm just stating what has worked for us. 

5.  You can never travel in the car by yourself if your child has a trach--We have never had nursing so all of Noah's care is my responsibility 24/7.  With two older children, we are always on the go.  Plus, Noah was constantly required to be at many appointments when he was younger.  I really had no other choice than to travel alone with him.  It was definitely a pain when he was hooked up to the vent because he always seemed to pull his circuits off.  I made sure to keep him attached to his pulse ox and placed the ventilator so I could see the numbers.  I also had a mirror that I used when he was backwards facing.  Every time he pulled the circuit off, he was awake and the alarms were always false.  I just found a good spot to pull off the road and reconnect him.  Of course, traveling alone depends on the child's specific health issues.  Some children need a lot of suctioning and some children are dependent on the ventilator and cannot breathe if it gets disconnected.  In these cases, I would not travel alone.  Again, consult your doctor on traveling tips.

6.  You can't travel too far from home or your hospital--For us, this was never the case.  Our first trip was to the beach when Noah was 7 months old.   (3 months after being released from the hospital).  Since then, we have been to Disney, the beach every year, the Wilderness at the Smokies Water park,  and several other places.  I always pack a lot of supplies, several extra of everything.  Traveling long distances can be done, it just takes a lot of planning.  The hardest part is figuring out how to set the vent up in these different hotel/condos. We make sure to take our long extension cords and our power strip. 

7.   You must have a full time nurse--We've never had nursing.  Our insurance does not cover it.  I'm not going to go into a lot of detail here because I've already blogged about this but it is definitely possible to take care of your trached child with no nurses.  (See my blog on Nursing).

8.  Your child will never have a normal life--Again, I'm not going into a lot of detail here because I've already blogged about this.  (See my blog entitled Normal).  I must say that Noah is as normal as you or I.  He just needs help breathing at night and when he's sick.  He goes everywhere we go and has all of the experiences that my girls had at his age. 

9.  Your child will have to be institutionalized--Unfortunately, this is what we were told when Noah was in the NICU.  The doctors were baffled.  They ran every test they could think of and everything came back normal.  He had EEGs, EKGs, and tons of Xrays.  Everything was normal.  He had so much blood taken from him that he had to have 2 blood transfusions.  There is nothing more horrifying to a parent to come in the NICU and see an IV in your child's head.  Everyone around us was going home.  Day after day beds were being emptied and there we sat, waiting for answers which would not come.  "I don't know" became the doctors standard answer.  Finally, after he had a seizure and was put on the ventilator, they were going to transfer him to Children's Hospital.  The doctor came over to us, handed us a piece of paper and said that they thought that he had Ondine's Curse.  She said in all her 40 years of being a doctor, she had only seen one case.  She then went on to say that he would more than likely be institutionalized the rest of his life.  Her parting words were for us to read the paper she gave us and she was going to leave us to process.  I was in complete shock.  I looked at the paper and it was one paragraph on CCHS.  It was so complicated and very negative.  At this point, I lost hope.  I lived in a deep dark fog until he was finally moved to Children's and they were so encouraging.  The day we got the diagnosis, all the doctors gathered around (which is never a good sign) and told us they had the test results back and it was CCHS.  I immediately broke down because I had been reading things on the internet and after being told by that other doctor, I was thinking that he would not be able to live with us.  Through my tears, I heard his new doctors say that everything would be ok.  They told me he would live a normal life and be running around like a normal toddler.  They said he could do anything he wanted to do (except maybe deep sea dive).  I began to feel hope again.  They were very honest and said it would be a long process to get him home.  I remember saying "home?".  They probably thought I was hard of hearing or something because he kept repeating the fact that Noah would come home.  In our case, the doctor was wrong.  They did not understand the disease and were not very educated.  I think they underestimated us.  For some, an institution is the only option.  Some care is so involved that one person or even a whole family cannot handle doing it alone.  In Noah's case, it just did not make any sense. 

Living with a trach is certainly different.  The main thing is know what to do in an emergency situation.  (trach plug or decannulation-when the trach comes out accidentally).  It is important to know how to clean the trach site and prevent infections.   Other than that, it is not complicated at all.   My main goal is for people to see that the trach is no big deal.  It's really no different than someone using an inhaler or a shot for diabetes.  Don't be scared of it just because it's something you don't see every day.