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Whoa, Momma!

Sharon Kennedy Wynne, Tracey Henry and Suzannah DiMarzio

Some tips for when kids are in the hospital



Happy news: The Little Koala was released from the hospital after four days. It took her -- and the whole family -- somewhat longer to completely shake The Crud that was stalking us. But it is wonderful to all be under the same roof again.

Unfortunately for the Koala, this was not her first time in the hospital. Not by a long shot. In her first six months of life, she had four hospital stays. The first was two months long, the second was about three days, the third about ten days, and the fourth nearly a month (and over Christmas, alas). It is stressful and scary to have a little one in "the big house," as we called it. Getting information is crucial: It is much easier to be calm when you understand what's happening and why. And a calm and supportive family is crucial for the little one who's ailing.

Here are a few tips for communicating with the medical team caring for your child. They are all things my husband and I learned from experience.

Know who is who. You may feel like you don't see the doctor that much, yet there are a lot of people running in and out of your child's room, drawing blood, adjusting monitors, taking blood pressure, etc. Ask each person his or her name, or glance at the name tag. Understand the role of each person in your child's care. When the Koala was in the Cardio-Vascular ICU, I had to ask a nurse to explain the unit's organization. In our case, there were two doctors on at all times, a cardiologist and an intensive care doctor, in addition to the army of nurses, nurse practitioners, respiratory therapists, patient care assistants and many others.

Direct your questions to the correct person. You'll get the best, most complete, answers that way. For us, that meant saving heart-specific question for the cardiologist, and general medical questions for the intensive care doctor. Nurses took us through patient care, explained what each monitor showed and what each med was for, and a billion other questions we asked. Other specialists and practitioners also got the third degree whenever they came near my little one.

Find a translator/ambassador. Sometimes medical personnel give us too much technical jargon. Identify a staff member you find easy to talk to and ask them to translate. Also, if you aren't sure what to ask or what to expect about something, run it by your person. If they don't know the answer, they can find it for you or direct you to the right person to ask. This person may or may not be the nurse caring for your child that day. If it's someone who's not assigned to you, don't hesitate to ask, but be respectful of their other duties if they don't have time to chat.

Have a few set questions ready. Sometimes the hospital can be so overwhelming, you don't even know what to ask. Or if your child is in the big house for a while, you may feel like you are running out of actual questions. Here are a few that work every day:
     * What is your plan for my child for the day? The week?
     * Explain to me again my child's diagnosis/defect/treatment/whatever. (This one is great to ask each provider; everyone says things in a different way, and every time I heard about the Koala's heart, I understood a little bit more.)
     * What signs will indicate progress? What symptoms might cause you concern?
     * Every patient is unique, but what might a surprisingly quick recovery look like? Conversely, after how long with no improvement would you begin to be concerned?

Get an idea of what the monitors show. Modern medical science is miraculous. But all these monitors and machines are intimidating. If your child is hooked up to a tower of them, learn your way around them. You don't need to understand every number, beep, blip and line. Ask a nurse what is the most important of all the monitors in use. Look at what your child's reading is, then ask what higher or lower numbers might mean for your child. Ask what number would be a serious concern. Once you have that monitor down, ask what the next most important one is. As parents we probably can't understand every bit of data in the room, but knowing a bit makes it way less scary when something starts beeping. And things are always beeping in the hospital.

We recently went to the cardiologist for a followup. After our examination and whatever tests are done, I always ask the doc one question how what the future holds for the Koala or for us as a family with a heart baby (or, as she grows, a cardiac kid). Some are Big Picture questions, but nothing is too trivial. Some things I have asked our doctor: Can our girl play sports when she gets bigger? (Yes.) Will she need medication all her life? (Yes.) Will she need surgery when she gets older? (Possibly.) Can she ride roller coasters? (No.) What do I tell a first responder or paramedic if she is in a serious car accident? (Single ventricle, normal oxygen sats 75-85, call our cardiologist ASAP.) 

-- Kate Brassfield

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[Last modified: Wednesday, December 8, 2010 11:07am]


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