Hospitals Far from Home

Going to the hospital with your child is hard. Going to the hospital far from home with your child adds several layers of difficulty to your stay.

  • No popping home for forgotten items.
  • No friends to come keep you and your child company and stave of boredom or distract from worry.
  • Less time for both parents to be there together (especially if you have other children at home).

It requires coordinating carpools, entertainment, homework help, meals and emotional support for the ones left behind.

If admitted to the hospital unplanned or far from home, ordering on-line is an easy way to get snacks and essentials.

Our hospital journey started with our first 8 day stay at the local hospital when my son Gavin was 2. His brothers (6 and 8) were home with family support. Thankfully we were in a household with both parents and lived in the same area as grandparents and good friends. That was a long 8 days, but we managed because of the support we had. Dad could still go to work and pop in for the evenings. I was lucky enough to be able to stay the entire time with Gavin. I really felt for the kids on the hall whose parents could only come visit after work and were left to be entertained by the nurses and Child Life Specialists.

Our second stay consisted of days and weeks and eventually months at a large children’s hospital downtown DC when Gavin was 6. With traffic, the trip could take over an hour each way and the logistics became trickier, but not impossible. I stayed all week, with my husband visiting each evening after work, and then we switched out and I could go home to spend time with the older boys on weekends. There were lots of trips back and forth to the house. We would often get released after a few days or weeks only to return for a follow up check-up and end up being readmitted. I learned very quickly to lower my child’s and my expectations and pack a bag for each of these appointments. It didn’t stop me from stepping out in the hallway to call my mom for coverage of my older boys in tears as the worry mounted, but again, it was relatively close by.

As Gavin’s diagnosis and treatment became more difficult, we lost faith in the doctors and decided we needed to make a move. By the third hospital we were traveling from Virginia to Johns Hopkins in Baltimore, MD. With traffic it could take over two hours to get there. My husband, Keith, still tried to come each night to see us after work, but that meant not getting home until close to midnight and missing our 9 and 11-year-old sons completely. Some nights he could not come at all. We switched off on weekends when things were stable.

The first night I arrived in Johns Hopkins ICU it was 2 a.m. Keith had left us at the hospital in Northern Virginia around midnight after seeing Gavin airlifted in a helicopter while on a ventilator to Johns Hopkins. My husband once again took over caring for our older boys, while I made the drive to Baltimore. That trip had the least amount of traffic, but it felt like the LONGEST drive imaginable. When I got to the ICU there was nowhere to sit in the room let alone sleep. Gavin was sedated and on a ventilator for the next two weeks as he fought PCP pneumonia. The Johns Hopkins Children’s Hospital had very limited capacity for parents in their old part of the hospital. A new wing has been built since our stay and I hope they have taken parents’ sleeping arrangements into consideration. However, ICU is not a place to sleep. Round the clock intense nursing requires parents to find sleeping accommodations elsewhere. At most you will have a sleeping chair or couch, but there are no guarantees. Only when I asked about sleeping arrangements, was I directed to a parent’s room in the hospital that had 6 beds with curtains separating us.

From there I worked with the social worker assigned to me through the hospital to find a local place to stay. Hospitals usually have discounted rates at nearby hotels, but even with discounts those costs add up quickly. The social workers usually have a list of places that you can apply for with their help. Ronald McDonald Houses and other organizations often set up near hospitals, but you can run into wait lists and the demand often exceeds the supply. There are usually requirements about how far away you live from the hospital for these types of places if they are in high demand. Coming from Virginia, we were eligible and lucky enough to find a room at Believe In Tomorrow Children’s House, just down the street from the hospital. It was an advantage to be able to go back and forth if necessary, in the middle of the night without driving. My hospital time usually required a prescription sleep aid since I am a light sleeper and stress does not help that situation, so driving was not an option.

I have found hospitals in large cities makes it harder on parents (especially moms) who have to wander the unfamiliar streets at night. Some hospitals near college campuses arrange for football players from the university to escort parents late at night as a community service.

Most large hospitals in bigger cities have housing options for parents, but it can be hard to find them without the help of a social worker from the hospital. The rates at these houses are greatly reduced compared to hotels. They have cooking facilities and dinners provided by local volunteers. Another advantage to these kinds of housing options is that they provide a place to park your car at no cost. If they are too far from the hospital to walk, they usually have shuttles. Hospital parking can be quite expensive. If you are living in the hospital with your child, ask your social worker for parking validation tickets and food vouchers for the hospital cafeteria. They can often help you with those, as well. Do not be afraid to ask your friends for help. Many will ask, “What can I do?” We had close friends would organize road trips from Virginia to bring us goodies and restock the house where we were staying with food and supplies

We spent years in and out of Johns Hopkins. We had monthly, then quarterly, checkups when Gavin was in a stable place, followed by weeks of hospital stays as we watched his liver deteriorate due to auto-immune hepatitis in 2016. We fell into the usual routine of me staying with him in his room during the week and swapping with my husband on weekends.

His final hospital stay was at the Children’s Hospital of Philadelphia (CHOP) years later in 2017. He was on the wait list for a liver and too sick to be home. The transplant team at CHOP had agreed to do a liver transplant, but unfortunately no family members were a match to donate. Our new hospital, even further from Virginia, presented more challenges. No more evening visits from my husband or friends coming by. He came on weekends and perhaps stayed an extra day or two, if we had coverage at home. Holding down a job during these times is critical to your healthcare plan so sacrifices were made. His work was wonderfully understanding, but he was still trying to find quiet places with good cell phone coverage to conduct conference calls for work within the hospital.

Ronald McDonald House in Philadelphia

Our network of friends connected us with their friends in Philadelphia and suddenly we had friends of friends dropping food and hugs off at the hospital entrance. Then meeting us for a coffee in the cafeteria to give us a break. Ultimately coming to our son’s funeral when the worst happened. They will be lifelong friends after supporting us, total strangers, through our tragedy.

When you are in the thick of it, just remember to put one foot in front of the other and be strong for your child. Rely of those that offer help. Family, friends, Social Workers and even total strangers will do what they can to ease the path forward.