Caring For Your Other Children

If you have a child in the hospital and other children at home, you know without a doubt you will need help. Hopefully you are in a community with strong ties of family or friends or a church community. Depending on the age of your children, you may need round the clock presence at home with little ones or someone stopping by to make sure things are under control in the case of teenagers. Over the course of our youngest son, Gavin’s, long illness and multiple hospital stays, we had other children ranging from 6 and 8 years old when he was first admitted to a hospital, all the way up to 18 and 20.

Each age has its own challenges. What do the other children understand about what is going on? How will they interpret mommy and daddy being pulled out of their daily lives? Will they fall off the rails emotionally or in school? Will they try to take advantage of their parents’ absences? Each child at each age will of course act differently and it is really hard for parents to keep an eye of them when their focus is on the sick child.

First thing to do once you have coverage for your children and know their basic needs are being met by family or friends is to contact their teachers and counselors at school. Lay it out for them what you are up against and ask for their help. If homework slides you want the teacher to be understanding. Your child in the hospital will also have to deal with the schoolwork they miss (Missing school will be another blog post.)

Depending on the length of the hospital stay it may be a small blip in their lives or a giant hole. Try to set up a new routine of Skyping or calling on a consistent regular basis, if you are not able to pop home. Hopefully one parent will be able to remain at home and come and go from the hospital as a way of keeping the children in their regular routine as much as possible. Even when we were at the local hospital and not hours away, my husband would come straight from work to the hospital and rarely get home before the boys were in bed when they were little. We relied heavily on their grandparents who lived locally and moved into our house for weeks at a time to care for them. We got complaints from the children that, “Granddaddy won’t let me…” but we were so appreciative of their help. In some ways the relationship between the grandparents and grandchildren changed from nice fun visits to rules and laying down the laws about bedtimes and screen time, but they stepped up to the challenge which is what we needed from them.

Anyone who has been a teenager and raised a teenager knows that it is a tricky time in their lives. They push limits and boundaries (at least mine did) and they often take advantage of parental absence. Even with grandparents playing a roll, teens can see what they can get away with and be completely self-centered at times. I recall the phone call from the Principal of my oldest son’s school a week after I arrived home following a 3-month hospital absence with my son Gavin (ICU for 4 weeks, regular floor for 4 weeks, rehab hospital for 4 weeks). He was being suspended. I could not believe I had to deal with this problem and was furious at my son for laying yet another thing on my plate. After some reflection, I decided that in the grand scheme of things I should not be surprised that he was acting out and a suspension was, after all, not life and death, which I had just lived through with Gavin. Sick children tend to put your life into perspective.

Family and friends stepped up to try to be a presence in my middle son’s life, but he found himself on his own much of the time. My oldest son was, by this time, in college on the other side of the country and not living in the day by day stress. However, not being there is stressful, too. It is hard to concentrate on a lecture with this kind of family drama going on.

Gavin and his older brothers.

In what ways has your family coped when there are other children at home?

Medical Bills: They can also Make you Sick

In the last few days I’ve come across a variety of stories about medical billing, all of them troubling.

Tonight on NBC News with Lester Holt there was a story about ‘out-of-network’ charges, even though the facility/hospital is in network. Sometimes there is a doctor or lab or procedure that is ‘out-of-network’. In an emergency situation, patients don’t typically have time to ask about each procedure and each doctor’s insurance.

While searching about CT Scans today, my husband ran across stories about doctors who get kickbacks for referring patients for scans.  

And my personal experience of reviewing a recent ER visit bill, my daughter commented that it is only in the medical profession where a test can be ordered, even if the patient doesn’t need it and then the patient (and/or insurance company) pays for it. For a sore throat and fever, she was given 3 strep tests in 2 days. The comment after the last test was, “you are right, you don’t have strep.” Should we/our insurance pay for the 3rd negative test?

What other needless tests are given routinely? Doctors may order CT scans, which can be 1000 times more radiation than a chest x-ray, for a small cough that is probably a cold to avoid being sued years later for missing a lung cancer diagnosis. Here is one story about unnecessary testing.

Medical providers want and need to be thorough, but to what expense? What other commercial industries decide how much you will pay for something you may not need?

Have you experienced out of ordinary medical bills?


Packing for a Hospital Stay

My very first blog. Wish me luck! Here are a few things to consider when packing for a hospital long stay. The first things you will need are favorite comfort items. My son, Gavin always brought his stuffed animal “Sharky”, a fleece poncho (the first prototype I made for what would become and his pillowcase full of old Halloween candy. Even though he rarely wanted candy, he found it comforting knowing it was with him. I myself brought my favorite stuffed dog, Wilber (given to me by my husband when we first started dating). After all caretakers need comfort too!

Secondly, pack things to relieve the boredom. Hand held video games, iPads/tablets, books and movies are a must. Most rooms in hospitals have DVD players, but it might be worth a call ahead of time to make sure. If not, bring a portable one from home or computer for streaming. I brought a gift from my business partner, Cindy, of colored pencils and drawing pad. I drew the logo for our business while sitting in a hospital staring at an IV pole.

The third idea is along with your toiletries, you should consider packing shower shoes (rubber sandals work well) if you are a person who doesn’t love the idea of standing in a shower that is basically the entire bathroom floor. Yes, they come and clean the rooms regularly, but you can never be too careful with germs in a hospital.

If you want to add a little personality to your wardrobe while in the hospital, I recommend fun fluffy socks with non-skid bottoms. Hospitals insist on the non-skid to reduce accidental falls. We are getting ready to launch fun, hospital approved fluffy socks in addition to our cozy poncho capes. After all, being warm and cozy while undergoing treatment makes for a better hospital experience.

What else have you packed for long stays as a parent of a pediatric patient?


What is a Child Life Specialist?

If you have read or listened to our media links, you may have come across the term “Child Life Specialist.” Many of the specialists have the letters CCLS after their names, for Certified Child Life Specialist. The CCLS is a medical care social worker in a hospital setting.

These specialists are the wonderful people in children’s hospitals who help children and their families with their hospital stays. Their roles are many: from play time to providing toys and activities, to comforting, to receiving donations, to education and emotional support, and a long list of other responsibilities.

It is usually the Child Life Specialists we meet when we visit a hospital to donate our ponchos. They are the people who decide what children will receive our capes.

This month’s alumni magazine for Boston University (Cindy, MBA) has an article about a program that BU offers in their College of Education & Human Development. The career outlook is positive (Bureau of Labor Statistics) for the next 10 years. If this is something that you might like to do, the first step is to volunteer, volunteer, volunteer. Learn as much as possible to see if this job is right for you.

If you have had a stay in the hospital with your child, did the Child Life Specialist help you with the stay? We welcome comments on ways the CCLS team helped ease your stay.

If you would like to thank the Child Life team following your child’s hospitalization and plan to donate in-kind gifts, consider donating Cape Ivy ponchos. For each poncho you purchase that is shipped directly to the Child Life department, we will ship a 2nd poncho. For example, purchase 3 ponchos and we will ship 6; purchase 5 ponchos and we will ship 10.