Updated: May 10, 2020
The phone call came in close to midnight, the voice on the other end, an emergency room doctor informed me that my youngest son was going to be airlifted to a Seattle hospital due to a collapsed lung. I was on the other side of the country, 3,000 miles separated me from my child. I knew panic would get me nowhere; besides, we are a veteran family of multiple hospitalizations. We have fined tuned “we have a child in the hospital, how do we function during a crisis?”
First, we always keep my husband’s John’s FMLA (Family Medical Leave Act) current because we never know when the hospitalizations are going to happen. The social worker at the hospital can help with FMLA if you don’t have one in place. It will require a doctor to sign the form. To qualify for FMLA, you must be with your company for 12 months and worked a total of 1,250 hours, and your employer has 50 or more employees.
I heard a doctor give a lecture on caring for a chronically ill child. One of the take away from the talk was one parent needs to be in charge of the medical care, i.e. be the 'Team Captain'. It is not a job that can be split 50/50, or else the quality of care would drop. The doctor was also a parent of a special needs child. In his family, his wife was the Team Captain even though he was a doctor. In my family, I am the Team Captain. John can fill in for me if need be, but I am the one that makes all the appointments and does the medical care. I am the one that spends the majority of time in the hospital with the kiddo.
I always keep in my vehicle a bag with snacks, phone chargers, medication, notebook, pen, and a book. If things at home are a bit dicey with a child who may or may not need to be hospitalized, I always pack a bag for the hospital and store it in the van. No bag packed means Murphy will come for a visit and the child will definitely be hospitalized. On the way to the airport on that September day, I turned to my friend and said I was tempting fate with a child being hospitalized as I just had realized I did not have my bag of snacks, books, etc in my van. We laughed, and then Murphy knocked at my door when the emergency room doctor called me with the news that our son Liam was in critical condition.
I am a firm believer that having a child in the hospital still requires a routine to the day. Without a routine to the day, the days tend to drag, and there is a lot of monotony. Depression becomes a genuine possibility for both the patient and the caregiver. Caregivers are twice as likely as the general population to suffer from depression. I am a morning person, so my natural rhythm falls in line with the flow of the hospital. I don’t start functioning until I am showered, dressed, and caffeinated, so it's something I always try to do before rounds start. Trust me; no one needs to see me in my PJs with bedhead at 6 am. I also like to meditate 10-15 minutes before the chaos of the day starts in the hospital. More likely than not, most of my meditation and prayer is “Please help me or help my child, Lord.” as the exhaustion and fear that surrounds me at that moment is very large and real.
Most Children’s hospitals also have a family center with access to a computer, printer, fax machine, cell phone charging cords as well as showers, laundry, and the forgotten toothbrush. Ask where it's located and don't hesitate to use these facilities.
Rounds start early in the hospital, ask your nurse for the time (as the nurses should have a good idea). Also, let the nurse know that you would like to participate in rounds for your child so that you are present for the conversation with the doctors for the care plan for that day. Keep a notebook handy, so you can jot down questions or notes about care. Remember you are your child’s advocate. If you don’t understand something, ask for clarification. If something is stated and it is incorrect, speak up. Eighteen month old Josie King died in the hospital after the doctors had brushed off mom’s concerns. In the aftermath of Josie’s death, her mom Sorrel worked with hospitals to develop Rapid Response Teams. Anyone can call a Rapid Response Team including you the parent. If at any time you feel the care team is not listening and your child is deteriorating, call the Rapid Response Team. Remember, you are your child’s best advocate.
Society frowns upon letting your other children go feral while you are away at the hospital. This is the time to enlist family and friends for help. Don’t let pride get in your way. Take up others on their offer of help. Enlist help with getting your other kids to school or afterschool events. Say yes to the Grandma from church who has offered to come over and conquer your laundry monster. If pride is a problem like it is for me to frame the offer in another way in your head: You are doing the person who is helping you a favor. Volunteering is a great way to help with depression. It also helps with isolation. It counters the effects, stress, anger, and anxiety. It also gives a person a sense of self-worth. Everyone benefits from this situation. Remember at other times in your life, you can be the one saying yes to helping a family in need.
We are fortunate to have a community of friends that are very supportive. Years ago, our son Liam spent 6 weeks in the hospital during this time his sister was hospitalized 3 times. Every day for 6 weeks a different family would drop off a bag of groceries to get us through another 24 hours. Our good friend organized everything so the only thing I had to do was thank the person bringing the food.
As a homeschooling family, I often would pick up the other kids to spend the day at the hospital (please check hospital rules to see if this is allowed). Our day would continue just like at home, albeit one of the kiddos was in a hospital bed and too sick to participate in normal everyday life. I would pack snacks and drinks to keep cost of food to a minimal. I always famously bribed said children that if they were productive in school work and well behaved, we would splurge on grill cheese sandwiches from the cafeteria. Do not underestimate the power of grilled cheese. It is the perfect comfort food in a stressful environment. Our good family friend's daughter, Taylor requests a grilled cheese sandwich from the cafeteria at the hospital after every procedure she has.
During this time, relax your standards. Remember your children are also stressed and worried about their sibling. Do you really need to go to battle that one of your
brood did not eat 6 servings of vegetables that day?
As the caregiver it is important that you also take care of you. Hospitals are notoriously dry, drink lots of water. If you think you are well hydrated, drink some more. Do not give in to the allure of junk food. For me I limited my intake to one sugary, chocolate, stress-busting treat a day, not that I needed it. If I did not consciously think about what I was putting in my mouth, I would graze all day, eating nothing but junk and then later wondering why I felt so bad. I will run to the neighborhood grocery store and stock up on fresh fruits and vegetables, cheese, and yogurt. I am fortunate that our Children’s hospital is near a Trader Joes as I often grab one of their premade meals for dinner. If I have access to these items, I will eat them instead of junk food. It also helps save on the cost of eating at the cafeteria for every meal. If money is a concern for you, talk to the social worker. Most hospitals have vouchers for parents with limited financial means for meals at the hospital. Most hospitals have refrigerators and microwaves so parents can store their perishable food. Hospitals generally have a family lounge in the same area as the fridge and microwave.
We have had Thanksgiving dinner in the family lounge with extended family on more than one occasion, so much so that I feared our youngest child would grow up thinking that it was not Thanksgiving unless someone was in the hospital and we were feasting on turkey in the family lounge.
Sometimes life happens in such a way that a parent cannot be at the hospital the entire time. Know that you are not a bad parent if you have to leave your child to go to work. Keep the staff informed of when you will be gone, for how long, and how to get a hold of you. The notebook is a great way to communicate with other family members and staff in case you cannot be at the hospital the whole time.
We have had friends and family members spend the day while I worked, so our child was not left alone (the hospital is a lonely place to be at). The caregivers can jot down times medication was given, if the patient has slept and how long, if there are goals that the patient should be working on to get to go home, or if a specialist has dropped in to examine the child. It is also helpful just to have for your own reference. Days tend to run together; having notes to refer back on helps take the burden off an already overworked and stressful situation.
Finally, don’t forget to call your parish. Let the parish know what is happening so your child can go on the prayer list and for someone to be able to visit you in the hospital to bring you communion. Remember, most hospitals offer weekly/daily Mass. I know I always find great comfort in going to Mass or receiving communion in this stressful time.
I don’t want to be in the position of having to fine tune “we are surviving hospitalzations” but unfortunately, Liam’s hospitalization in September has left the door open for another hospitalization in the future as he is it at risk for his other lung to collapse. I do know when the other lung collapses, our family has a working plan in place to get us through another ordeal.