by Angela Donn
Traveling far from home to undergo surgery adds stress upon stress. These are a few things we experienced that might be helpful to other medical travelers. And you will find some fun experiences along with the stress and seriousness of the surgical procedure.
Any time you have to stay for an extended period of time, hotel bills can add up quickly. For both of our surgeries where we were staying for two weeks we leased a corporate apartment. It was awesome. We had two bedrooms, two baths, a full kitchen, in-apartment laundry, dining area, living room, and balcony. Pools, weight room, business center were all available. It cost the same as the cheapest hotel we could find near the hospital but turns out way cheaper since you don’t have to go out to eat every meal. If your loved one is on steroids to help prevent brain swelling, chances are they will eat like crazy. Having a full kitchen for meals on hand is so helpful. Also, if your loved one needs to rest for long periods of time, having more than one room is so nice so as to not disturb them but feel comfortable yourself.
It can be very difficult to get into the Ronald McDonald House in Houston. There is high demand and you need to call each morning to check availability. There is no TV in the room and you are not supposed to eat in the room either. That is tough when recovering from surgery and all you do is lay around and the steroids make your child into an eating maniac. But it is clean, there are lots of toys, activities, and other children to play with. A few groups volunteer to make food throughout the week so often there is a free meal. You have access to a full kitchen and laundry. There is one television room per floor. It has proven difficult to get in (we tried at least six separate times). We have gotten in twice on follow-up visits for shorter periods of time.
Some hotels do offer discounted rates for people who are staying for medical appointments. But sometimes it is just cheaper to go through hotels.com or kayak.com. I usually find a price on one of these sites then call the hotel directly to see if they can beat that price. You may be able to get a list from a hospital social worker of hotels in the area that offer discounts or have shuttle buses to the hospital.
Airfare can be a huge expense as well. Many charities give away tickets but generally your income needs to be below poverty level to qualify. We were able to get free tickets through American Airlines for one of our trips, and Southwest through another. That has helped out so much because it is generally at least $1200+ for the three of us to fly and we flew five times in one year alone. Check with the hospital social worker if she has any access to airline tickets (that’s how we got the Southwest tickets.) But those free tickets expire so be sure to check the date. One time we showed up at the airport with a reservation not knowing the free tickets had expired and had to buy new tickets right then, which weren’t cheap. We also got a Southwest Visa credit card to earn miles for more medical visits.
Setting up some type of communication to friends and family through the internet can be helpful. I am not a big fan of personal info on the internet and before this all happened I only had one baby picture up of Eli on my facebook page and didn’t even mention his name. Well, now we have a website and a facebook page devoted to him alone! This is a good opportunity to spread the word about HH and also keep in touch with loved ones about what is going on. At the end of the day, I am too exhausted to talk to people but at least they can check in from time to time to see how things are going.
Packing can be a challenge. We started a list of things to bring at least two weeks before and put everything we need for a normal day on the list. Having laundry available for the longer trips allows me to pack minimal clothes. We need room to pack some toys for Eli. He loves books, art stuff, and legos which are easily packed. We also stop off at the library and pick up bunches of audio books and DVDs. He does not watch a lot of TV in our home, but we make major exceptions for the plane ride and hotel. Netflix, PBS kids, and youtube are great for positive cartoons. We also pack stuff like dishwashing liquid, a sponge, laundry detergent, etc. Stuff you might not think about for your usual travels but don’t want to have to buy once you get there.
Family may want to come with you for the surgery. We did not want anyone there for the day of the surgery. Although our family is great support, it is a long day just waiting around to hear now and then from the doctors. We wanted to be able to just relax, watch some comedies on Netflix, and not have to worry about if family were comfortable, entertained, etc. My parents came to Texas right after the first surgery but really they weren’t much help. They sure tried to be, but Eli only wanted mom and dad to help. So they made us some nice meals but I think felt a little helpless. My in-laws wanted to come for the second surgery and we asked them not to come. We had been through this once already and knew it was a long trip in which they would not feel very useful. Don’t be afraid to tell your family what you want/need. It is hard to say “Please don’t come.” And it is hard to say “I really need you there.” Whichever way you are feeling, express it because you do not need to add extra stress to your life during that difficult time.
Even though Eli was 4 years old by his second surgery, we brought a stroller for him. The steroids make him lethargic and grumpy. Having a stroller is so helpful for the airport, or long walks through a parking garage, or really anywhere you have to go. You can also call the airline ahead and request a wheel chair.
While we stayed in Houston, Eli was in love with the Children’s Museum. We went the one evening when it was free and then decided to get a membership. We actually looked to see if there was reciprocity with any Baltimore museums and ended up buying a Maryland Science Center membership. It was perfect because we must have visited Houston’s Children’s Museum 20 times over all our trips there and it was covered under the Maryland membership. So it is worth looking to see if any memberships you may have or are thinking of getting in your home town have reciprocal memberships with anything in the city of your surgery.
Getting out for small touristy trips may help everyone feel a bit better. Don’t push it too much, but sometimes getting out if your child is able can help. Again, here the stroller would be helpful. You may find a stroll around a park, or the zoo, or an art museum can improve mood. You can also google free things to do in the town you are traveling to. Most museums have a free or discount night. Even just a ride on the public transit system might be fun for your child and not too overwhelming.
Traveling for surgery is an added stress on top of your child’s medical issues. There is much anxiety for everyone and emotions are high. Being prepared ahead of time will make this difficult experience a bit easier for everyone.