While children are thus far making up a very small percentage of hospitalizations for COVID-19, it is possible that your child may need to be hospitalized with the disease. In addition, some children will need to be hospitalized for other conditions during the time of the pandemic. We’ve collected five strategies to help you prepare in advance for either scenario.
1. Create Post-able Instructions
Unfortunately, your child may end up being hospitalized alone, either due to hospital visitor regulations or because you as a parent have COVID-19. [Editor’s Note: on 6/9/2020, the federal government issued guidance as part of a civil rights resolution stating that all hospitalized people with disabilities should be allowed a family member or caregiver to provide support services.]
We all know how easy it is for hospitals to make mistakes. I suggest making instructions to send with your child that can be taped to doors, walls, or windows if necessary to help your child get appropriate care.
If your child is nonverbal or unconscious, these materials may be the only information the hospital has on your child’s care. It is critically important for the hospital to know the most important aspects of your child’s condition and care in a concise, simple way.
Put each important instruction on a separate page using large fonts and dark inks. Some of the suggested instructions include the following, though of course it will be different for each child:
- Your child’s code status. This is critical for the hospital staff to know during a pandemic. If you want your child to be intubated or resuscitated, write FULL CODE. If your child has another code status, you can use that instead. Commonly understood terms include DNR (Do Not Resuscitate), DNI (Do Not Intubate), No CPR, or POLST/ MOLST (Physician/Medical Order for Life Sustaining Treatment). If you have a POLST/MOLST or other similar order, send a copy with your child.
- Your child’s medications, listed by time to be administered or how often administered. Include the name and concentration of the medication, as well as the dose, and the administration route (oral, G or J-tube, IV, etc.).
- Critical risks, such as allergies, seizure risks, behavioral risks, or fall risks.
- List of daily medical procedures, such as nebulizer treatments, cough assist treatments, vest treatments, suctioning, catheterization, and so on, including how often they are done and using what settings or sizes.
- Nutrition, including what is fed, when, how fast/slow, and by what route (such as oral, G-tube, IV).
- List of major diagnoses. Don’t list every little thing, but make sure all the important ones are on there.
- Any other critical information. This could include vital signs if your child has atypical ones (such as always having a low temperature or fast heart rate), notable behaviors, or the fact your child is typically non-verbal.
- Your name, phone number, and email so you can be reached immediately.
I would also suggest making a complete guidebook to your child’s care, listing out everything there is to know about your child, as well as an hour-by-hour guide to care. Keep a copy at home and send one with your child to the hospital. It can be used as a reference manual to flesh out the summary pages created above.
2. Go to a Children’s Hospital if Possible
Since children are far less likely to be hospitalized for COVID-19, hospitals that only serve children are more likely to have ICU beds, ventilators, and other resources that may be strained at a community or adult hospital. They are also more likely to have experience with children and have child-sized supplies, such as child-size masks for non-invasive ventilation.
In some hard-hit areas, children’s hospitals may eventually find some of their wards or beds taken over by adults. At this time, however, we are not aware of this happening.
3. Bring ALL Your Child’s Equipment and Supplies
Shortages are increasing, and so it is critical that you bring all of your child’s equipment, as well as a week’s worth of supplies if possible, to the hospital. This includes medications and any specialized nutrition, such as tube feeding formula.
For example, the hospital may or may not have a ventilator available for a child who already uses one, and many hospitals are keeping children on home equipment to preserve scarce resources. Bring all of your equipment as well as any disposable supplies required for them to work. Especially important to bring are any specially sized or manufacturer-specific items, such as feeding tubes, trachs, CPAP or BiPAP masks, and so forth.
Some hospitals are also experiencing shortages of critical supplies and medications. Bring as much of your personal supply as you can.
4. Prepare for Visitor Restrictions
If you are fortunate enough to be allowed to stay with your child, the hospital may put severe restrictions on your movements, particularly if your child has COVID-19. In almost all cases, your health will be screened daily and you will be required to stay in your child’s room at all times. Typically, only one parent is allowed. Personal protection equipment, such as a mask, most likely will be required. Some hospitals will allow you to leave at night; others will not allow you back if you leave at any time. Restrictions will vary depending on why your child is hospitalized and the particular hospital.
In addition, if you have symptoms of COVID-19, test positive, or have a confirmed exposure, you will most likely be required to stay at home. This makes the post-able items listed in Part 1 above all the more important, as you may be forced to leave your child alone.
5. Keep Your Child at Home if You Can
If your child is experiencing a medical emergency, he or she should of course be brought to the hospital immediately. But if you can treat effectively at home, you should. Call your child’s doctor or medical program before bringing your child to the Emergency Department or hospital. They may be able to help you stay at home by changing orders, sending out more equipment (such as a nebulizer), or prescribing medication over the phone.
For example, children above age one with a manageable fever usually do not need to be taken to the hospital. Similarly, if you already have oxygen and oximeter in the home, your doctor may be able to keep your child at home by changing the settings. Children with GI distress who have feeding tubes can often be kept at home by temporarily changing to continuous feeds of an electrolyte solution or diluted formula.
Other emergencies that would have required an Emergency Department visit in the past may now be able to be handled through telemedicine or a direct appointment with a specific department, such as Interventional Radiology or Laboratory. Some services, such as X-ray and phlebotomy, may even be sent to your home. Always call your doctor or medical program before going to the Emergency Department to see if any of these options might be better for your child than a hospital visit.