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A Top Ten For Parents of Sick Kids

January 29, 2013

I was talking today to a friend and colleague who recently had premature twins.  We were talking about the experience of having hospitalized children, both as doctors and as parents.  Many of his experiences were similar to my own when my second child was hospitalized after birth with a congenital diaphragmatic hernia.  As physicians my friend and I both have both an advantage and a disadvantage:  we know the system but we also know too much.  The hospitalization of my child is the worst thing that’s ever happened to me, as well as to her.  Here are ten ways to make the hospitalization of your child a little less like Hell:

1. As soon as you possibly can, find out what the discharge criteria are for your child.  Get a list of the things that must be accomplished before your child can go home, and push every day towards those goals.  Most children’s diagnoses have what we call “protocols” attached to them, meaning theres a checklist of things that can be anticipated as possibly a problem for your child that need to be addressed.  So for instance, all premature babies, or babies born under I think 7 lb, need to have a car seat test.  In this test, the baby must sit in his car seat for a couple of hours while being monitored for breathing problems associated with that position.  You could lose a whole day waiting for that to be done.  Another example:  maybe your child needs to gain X amount of weight per day or week.  Make that weight target your life goal.

2. Be there as much as you possibly can.  Things will get done without your knowledge, or nothing will get done at all, if you or a close surrogate are not there.  This is especially true for daily rounds, which can happen as early as 5 AM and may provide you with your only opportunity to speak with the doctor in charge of your child.

3. On that note, find out who is ultimately in charge of your child’s care.  This will be your surgeon or ward attending usually.  A ward attending is the senior doctor assigned to be in charge of all the patients on a ward or service for a period of time.  These doctors are faculty of the local medical school but might spend most of their time in lab or clinic.  Be warned however: in most large medical centers ward attendings will change every week.  This is a TERRIBLE system, because doctor’s opinions on things will vary.

4. Your nurses will vary too, but a lot less.  Most nursing staffs try to give your child the same few nurses all the time.  Use your nurse, I cannot emphasize this enough.  She/he has more access and more knowledge than many of the resident doctors do.  Your nurse is likely to have seen what your child has before and know the details of how the disease either progresses or gets better.  They also have a lot of practical knowledge and advice.

5. Do not be afraid to ask to speak with the person in charge.  Be persistent.  You don’t care if you are considered a “difficult parent”.  You are advocating for your child.

6. Hold your kid.  A lot.  All the time.  My husband, when my daughter was in the NICU, would go in for hours every day and he said that his job was just to hold her as much as possible.  If you know anything about medicine, put a sheet over the heart monitor.  You are not there to care medically for your child.  You are there to be a parent to your child.

7. If your child is in the hospital for a long time don’t let anything scary or painful be done to your child in their room or their bed.  The room and bed should be a safe place.  If your child is older, consider their bed their personal space, their “room”.

8.  If you don’t know who is in the room, ask.  A lot of people will come in and out.  If you don’t know what medication is being given to your child, ask.  If you don’t know the purpose of a treatment, ask.  Be over-protective.  Now’s the time.

9.  Be aware that every child is different and every case is different.  What is happening to the kid down the hall with the same disease may not be what’s right for your kid.  Don’t compare.  Don’t read the internet.

10.  The best place for your child is at home.  Do everything you can to make that happen as soon as possible, within safe limits.

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