At one of my son’s recent sick child visits to his pediatrician, his doctor commented that he wished I would give a seminar to parents on how to avoid hospitalizations. Since I never seem to have time to give seminars, I thought writing an article was a great idea, and am thankful I get this chance!
When my first child with medical issues came along, I was sufficiently scared to death. We spent weeks of every month in the children’s hospital. It seemed like this little fellow would just suddenly get sick—seriously sick—and my only recourse was hospitalization. Even his doctors couldn’t seem to prevent the hospitalizations.
However, I began to notice that he had warning signs, days and sometimes up to a week before he actually became critically ill. I started to monitor him closely—O2 sats, respirations, blood pressure, behavior-—and writing a journal. Soon I formed a good picture of his warning signs. I also asked his pediatrician to teach me how listen to his lungs with a stethoscope. A nurse friend of mine also helped me, and I found out that there are even YouTube videos of respiration sounds to help guide me.
Once armed with the knowledge of my child’s “normal,” I was able to go to his doctors and ask for an Emergency Plan. I learned to recognize the beginning signs of illness and what critical means for him. Now I have plans for each of my children who are medically fragile. The plans change as their needs change.
I keep a notebook of each of my children’s vital information, medical diagnoses, doctors, surgeries, and serious illnesses, as well as current medication concentrations, dosages, reasons for the medication and how the child takes each medication (orally, in apple sauce, via G or J tube). I also keep an Emergency Plan attached. Here, for example, are plans for seizures and illness:
- Bolus of Keppra for seizures
- Versed/Midazolam intranasally as needed for infantile spasm seizure clusters
- Diazepam rectally for convulsive epileptic seizures lasting longer than 5 minutes
- Prelone Syrup 2x daily via J tube for 5 days for excessive retractions and stridor, or respirations greater than 40
- Albuterol every 4 hours when wheezing
- Ventolin every 4-6 hours
- For severe coughing, wheezing, or shortness of breath, give treatments every 20-30 minutes, no more than 3 in a row. Then with improvement, spread out treatments to less often as tolerated.
Some things to keep in mind:
- You know your child best; go with your instincts.
- Nighttime is often worse, so if you notice symptoms in the morning, call your doctor.
- Be sure to create a plan with your team of doctors about who you should call. Some specialists prefer you direct everything to your pediatrician first. Other specialists (such as pediatric surgeons, pulmonologists, neurologists) would prefer you call them about related conditions rather than going to the pediatrician first.
- Try to avoid ERs unless absolutely necessary. ERs, even children’s ERs, are havens for other illnesses your child could pick up. When you have to be in the ER, be very vigilant. Wash hands, wear masks, and make sure the staff washes their hands.
- Realize that ERs and hospitals go by a list of normal vital signs for each age. However, you know what is typical for your child, and you know what are the early warning signs. Document everything so that you can show this to doctors and staff.
- Avoiding hospitalizations can also avoid secondary infections, as well as provide a better quality of life for you and your child.