Like they always say, “it takes a village,” it really did take a village. My mom flew in from Dallas, and so we had to stay at a hotel because we had my other daughter with us. I know the hospital provides accommodations and that’s very nice, but it’s hard with a four year old to have her in a place with communal living situations. So we stayed at the Marriott Residence Inn, which is less than a mile from the hospital, and really new, really clean. We rented my mom a room, and then my mother in law came, just for a few days. My mother-in-law was very kind, she had a bunch of Marriott points, and so she gave us all of her Marriott points so we were able to get some free nights because it’s incredibly expensive. Even if it’s the Residence Inn, you’re staying there 15 nights. And they offer the Children’s Hospital discount. My husband would come, I would stay overnight and then I would call him because she would want Daddy when she woke up, and he would take a cab over or walk over in the morning, so that I could sleep for a little bit in the room with her because she woke up a lot throughout the night and she wanted me to hold her hand through the crib, and tell her it was okay.
There’s a family who also had surgery at Boston, it’s like the Ethan A. Lindberg Foundation, and they’ve just started something which is incredibly cool for heart families, it’s in Boston, they’ve rented a furnished apartment within walking distance to the hospital. I’m a member of a couple of heart forums on Facebook, and I told so many people about it because I’m like, “That would be amazing” if we could’ve used that, it would have saved us thousands of dollars. But in the moment, especially when you’ve lived through the different standards of care, I would have sold everything, I would have done anything to come to Boston. In that moment, cost doesn’t matter. I’ve gone back to work, I can go back to work, it’s fine.
– Anna, mother of Elizabeth, age 2, VSD
Unfortunately, we haven’t been able to take advantage of hospital housing because he also is immune deficient. When he had the varicella—having it at such a young age stripped his immune system, so he gets something like a common cold and it puts him in the cardiac ICU. So the Yawkey House was what was available to us, but they have communal bathrooms and kitchen, so we have to get a private one. We’ve stayed at The Inn at Longwood, when we’re here for a little bit longer though, that’s kind of hard for four people to live in that space, so we’ve we’ve found housing for short term apartment rentals and stuff, just around the Fenway area, and that’s been the best option. We’ve been lucky enough to be able to afford that, because there’s groups at home that kind of helped support us to get this help.
– Alice, mother of Zach, age 3, Single Ventricle
Child Life had set up a place for us to stay within hours of us getting up there, and that was awesome to not have to worry about that financial burden of, “Where are we staying? Where are we getting the money from?” Having a place to go and shower, really most of the time we spent at the hospital. Every once in a while, we took turns to go catch a few hours of sleep, just having that to not have to worry about was awesome.
– Abigail, mother of Johnny, age 9, HLHS
Melanie: I picked apart the hospital website and searched for everything. I found the Yawkey House because when you look at staying in a hotel around here, and the cost of it, for most families it’s totally prohibitive. The thought of staying in a hotel for anywhere from a week to two weeks or more—there are resources out there for people though. But unless you’re somebody who’s very comfortable with the internet and you go searching, you don’t always know that. They’re very stressful, and those are the things, for me, I have to have in place in order to deal with the bigger picture.
Walter: Even just the information about how you can get the parking validated so it’s only like seven bucks a day, I mean that’s a big deal! From a patient-parent perspective, that information needs to be very easy to get at on the website.
Melanie: Because those housekeeping pieces are huge. And like for the Yawkey House, you can’t park there unless you’re handicapped, so we always joked because we went to the Yawkey House, unloaded, brought the car to Children’s Parking and walked back, and so here we are at five o’clock in the morning before James’s surgery, walking to the hospital. I felt kind of bad as a mom, “Okay kid, let’s go walk 20 minutes to the hospital so you can have your big surgery!” But we’re walking and talking and of course it’s very quiet and all of a sudden we hear this rustle rustle rustle, plop! We had woken a squirrel up in a tree and it fell out of the tree! James now says, “Remember when we were walking to the hospital for my surgery…”
Walter: That kind of broke the ice, James just started laughing.
Melanie: I was telling another heart mom about it—you feel kind of bad having your kid walk to the hospital for their surgeries, but they’re healthy kids, unless something unusual happens. So for us the walking was a good thing.
– Melanie and Walter, parents of James, age 20, Anomalous Coronary Artery