Resources on hand if your kid is in hospital
Q: What resources are available for parents whose children are hospitalized for prolonged periods of time?
A: Fortunately, this stressful scenario is one most parents don’t encounter.
Most pediatric hospitalizations are for short, self-limited illnesses, such as bronchiolitis, asthma, pneumonia, dehydration, seizures or trauma. Some children, however, have illnesses that require prolonged hospital stays. Children with cancer, congenital heart disease, chronic lung disease, cystic fibrosis and autoimmune disease (to name a few) are admitted to the hospital more often, and for longer stays, than their peers. These children and families know the halls, rooms and elevators of the hospital like the back of their hand. They celebrate birthdays in the hospital, with parties organized by Child Life. Instead of playing with their dog, they get visits from the Pet Therapy dogs. They Facetime with friends and family who cannot be there in person. Children amaze in their ability to adapt, to extract moments of joy in the midst of something unpleasant. But what about their parents? How do they cope?
These parents stay in the hospital day and night, advocating for their children. They participate in rounds, care conferences and talk to various sub -specialists all day long. At night, they sleep in tiny mattresses tucked in the back of their child’s room, waking up bleary-eyed in the morning to check on their child and then head home to care for other children, do laundry, go grocery shopping and maybe see their spouse. All too soon, it is time to head back to the hospital. Parents will alternate shifts, with one parent at the hospital during the day and the other at night. They suffer the effects of chronic sleep deprivation, social isolation, poor nutrition, lack of exercise and chronic stress.
Resources for these parents include their child’s doctors, nurses, social workers, the Patient Advocate, Pastoral Care and Palliative Care. For families who live out of town, housing assistance is available at the Ronald McDonald House, Casa Esparanza or local hotels. When parents are not able to work because they need to be in the hospital, the medical team is happy to fill out Work Excuses or FMLA paperwork.
I asked one family if they would share some thoughts with me about their experience. This young family was in the PICU for 6 weeks with their 4-year-old daughter who is battling cancer and related complications. It was unclear when she might recover, uncertain when they could go home. What might they tell other parents who find themselves in the hospital for many weeks, with no clear end in sight? The mom wrote: “My first week in the PICU, I got on Facebook
to seek a support group. I just had to find parents who would know exactly what we were feeling, what we are going through or if they have ever experienced any situations similar to the ones we were experiencing.
I am so thankful that was available for us. The group administrator even had explanations of medical terminology on the page. We parents are able to discuss different situations going on in our “sick kid life.”
The other parents offer advice or just their thoughts on a certain topic. These interactions helped me realize that knowledge is power. So, that was my next move. I had to know what all these medical terms meant, what type of medications my daughter was being given and what effect they have.
We are lucky to have a lot of support from both family and friends. And above all, the thing that has helped my husband and me is having faith in God. We go to Calvary of Albuquerque and our pastors have come to visit our kid since day one. They come every week, once a week, to pray over our girl. And let me tell you, the power of prayer is strong!! Every day is a new day and a new victory for our kid! It’s all by the grace of God that we continue this long road, but a road that we do not walk alone.
A Mom to a Warrior Princess Battling Cancer.”
“Your life was ours, which is with you. Go on your journey. We go too.” Lullaby by John Fuller