Vacationing With Medical Needs
9/25/2021
We officially entered into the Fall season and here I am writing about camping…… I’m always a bit behind in life and where I do have good intentions to be timely, I’m just not. So here it goes anyway!
Vacationing with a medically complex child is not easy. It requires a lot of thought, preparation, equipment, effort and energy. Even when we make a checklist, I find myself forgetting something, because there is just so much to remember to bring. A checklist for Holden might include the following:
Medications (ones kept in container, refrigerator, and as needed meds)
Syringes for meds, mixing containers, bin to wash syringes in
Extra G-tube and extension set
Oxygen tank and tubing
Heart/pulse ox monitor
Tube feed formula with supplement
Feeding pump with charging cord
IV pole
Feeding bags
Diapers
Wipes
Disposable draw pads
Washcloths and burp rags
Toothbrush and toothpaste
Oral sponges and swabs
Air mattress and/or tent
Bed rails
2 sets of sheets
Mattress protector
Laundry detergent
Bath chair
Wheelchair
Additional seating
Enough clothes for two outfits/day and pjs
Toys
Sure, some of the things on this list are normal for having to bring when you have an infant but it all adds up.
Packing all of the meds is very stressful. You have to make sure you have ALL of them. Including the as needed medications that you leave the trip thinking you won’t need but always end up using them. It never fails, I always forget one, whether it be the one we keep in the fridge, the one that didn’t fit in the container or the as needed ones; one will be forgotten. You also have to count all of the meds to make sure you have enough for your trip so that if you don’t you have time to get refills. We recently went on a trip where I forgot to bring his as needed medications for constipation. And sure enough, he ended up being very uncomfortable and needed them. All of the stores in the small town didn’t have what we normally use and the two products we did find just didn’t work for him. He received two suppositories and two enemas and never had a bowel movement. He was not a happy boy and his pain meds weren’t working either so we ended up leaving a day early. Even after getting home and picking up a new medication for constipation this kid went 16 days without a BM. He always likes to prove a point that he’s extra special and the rules don’t apply to him.
It might seem silly to bring a bin for washing syringes. But trust me, it is very inconvenient to find yourself with dirty syringes and no easy way of washing them.
Holden recently had a respite stay and I remembered to pack an extra extension set but not an extra G-tube. The G-tubes hardly ever break but it does happen from time to time. Holden’s broke within two hours of his stay, luckily we have great family and friends who were able to help out in this situation.
I hate chugging along the oxygen and monitor, but we did have to use them this week so it’s important they come along. When Holden has a bad seizure he will have some respiratory problems afterwards and when he is having a really bad day we have to medicate him with sedatives. It takes a while for those meds to kick in but when they finally do, he tends to need a little supplemental oxygen until he is more alert again.
The heart monitor with pulse ox is normally needed for oxygen monitoring in the above mentioned scenario.
Obviously he needs his formula for nutrition. The importance of packing the actual formula can sometimes overshadow the necessary equipment to administer it. You don’t want to forget the feeding bags, pump, or the charging cord. We typically have the feeding pump attached to an IV pole, if you can’t bring a pole you have to get a little creative. Here are some pictures using a hanger to make life easier.
Holden has a lot of potty accidents. His little thighs can create quite the gap between himself and the diaper. Even with two diapers he will often pee through them. Because of this we need to pack extra sheets, clothes, disposable draw pads and laundry detergent! God bless my mother who has even washed sheets with me in a river during a camping trip.
Because of Holden’s physical limitations, he has a specific chair for bathing. We have tried more than one type and continue to search for something that works for him. Bath time can be a scary time. His unpredictable movements combined with water, soap and an ever changing mood can be very dangerous. While on vacation, sometimes we opt to hop in a tub with him, cram an old bath chair in the tiny RV tub or just do a simple bed bath.
Since Holden cannot eat or drink it is important to remember his oral care supplies. It’s all we can do to keep his mouth moist and clean.
As far as sleeping arrangements…… We have done the air mattress with pool noodles around the edge-does not work for him, he can roll up and over them. In the camper, we bring toddler rails and place them where necessary. When we stayed in a cabin this past July we tried something new. We bought a bed tent and placed an air mattress inside. One big enough and thick enough to make the tent a little taunt to keep him from falling in between the tent and mattress. It wasn’t perfect and it required a lot of fine tuning, but it worked for the most part. You can buy travel beds for special needs kids but they are ridiculously over priced and just not worth it when you don’t even know if it will work. It’s all about trial and error.
And lastly, (though probably not really lastly because I’m sure I’m forgetting something) additional seating can be very convenient. When we go camping we have to lift the wheelchair in and out of the camper. During a recent camping trip we brought a tumble form chair to keep in the camper and used his wheelchair if we were able to go outside.
Our last camping trip was a bit rough. Holden has developed quite the intolerance to heat and sun. He has always been sensitive to it, but now we can’t even take him outside or he turns red. It looks like he has a sunburn but he doesn’t. If it’s any hotter outside than 76 F, he really just can’t be outside. To the right is a picture of him after being exposed to a break in the clouds for literally 30 seconds.
Since Holden can’t be outside, one of us parents just have to sit inside the camper with him. It can be lonely, isolating and frustrating. Sometimes I don’t mind the quiet, but when you can’t ever visit with family or go off and do something as a couple or with our other kids, its just not fun. It’s sad, overwhelming and depressing when everyone around you is having fun. This is a fine line struggle because no one can really help us out and I don’t expect that of anyone. My husband and I were able to talk about this, and as sad as we are to admit it, we just might not be able to bring Holden along any more. We want to do as much as we can as a family and include Holden in everything we do, so it really is hard to come to this conclusion. But we have been blessed to have been able to include him this long.