When Your Child Needs Surgery...

Some helpful tips and advice from

families who have been through it

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Preparing for Surgery

¨ Find out everything you can about the surgery, hospital procedures before hand (Will you be allowed to accompany your child into the operating room and stay with him or her while anesthesia is being administered? How will anesthesia be delivered? Will you be allowed into the recovery room, and when? Will a parent be allowed to sleep in the child’s room, visiting hours, etc.). Don’t assume that every hospital allows the same level of parental participation. Knowing as many details as possible will help make you less anxious, and you’ll know that you’ll be able to keep promises that you make! A calm parent makes for a calmer child. If you are having difficulty dealing with your own anxiety, speak to your doctor about ways to handle it.

¨ One thing that may help your child prepare for surgery is a hospital tour. The child can get a first hand look at the table, the lights, and the equipment, and receive explanations of the procedures so that little is left to the imagination and fears may be allayed. The pre-hospital tour can be helpful for the whole family.

¨ If surgery is being done at a large medical campus,  look at a map and know where everything is before you go! It’s easy to get lost, especially when you’re anxious and feeling overwhelmed.  Maps, detailed directions and other information may be available on the facility’s website.

¨ If you are unable to make it to the hospital for a tour, there are online hospital tours available. One such tour can be found at the Band-Aides & Blackboards Web Site: http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/hospital.html.  The facility you are going to may offer its own tour online.  Check the website.

¨ There are books available to help kids of all ages deal with their anxieties about undergoing surgery. An MHE and Me favorite is: “Franklin Goes to the Hospital” by Paulette Bourgeois and Brenda Clark

¨ To help make pre-ops go a little easier: Start drinking lots of water 2 or 3 days before going to the hospital to make veins nice and “plump”, so that pre-op blood work and the IV will go easier.

¨ If your child will need crutches, a walker, or a wheelchair after surgery, try to arrange for pre-surgical training. It is a big help if a child can learn to get around before he or she is experiencing post-operative pain.

¨ Have your doctor give you prescriptions for pain medication prior to the surgery, so that you can have it filled and waiting for you at home when you arrive back from the hospital. Most children only need prescription pain medication for a few days. Speak to your doctor about “layering” Tylenol with Motrin after surgery, which means giving Motrin or Tylenol, then a specified number of hours later giving the other. As always, be sure to check with your child’s physician about any medications. You may also want to have  Benadryl on hand, for the “itchies” that often seem to occur after surgery.

¨ Will your child be in a cast or an immobilizer after surgery? Before surgery is a good time to try ways to get in and out of the car, up and down stairs, etc. Wrap your child’s leg or arm in a big towel, then playact how you will be able to many families wish they had thought of before their child’s surgery. The logistics of getting in and out of the car, then having to carry a child into the house, then upstairs, can be things that haven’t occurred to you and can be very, very difficult. When children are involved in the planning, they can be very creative at figuring out ways to move around, and you’ll be more accomplished at moving them without causing pain and anxiety.

¨ If your child is experiencing severe anxiety in the days leading up to surgery, he or she may benefit from deep breathing exercises, or talking through fears, etc.  If none of that works and your child is in real distress,  you may want to talk to your child’s doctor about a prescription for valium or other medication to help your child relax. 

¨ If you have a lot of people who will want to be updated on your child’s surgery and progress, you may want to sign up at Caringbridge.org for a free webpage that will enable you to post pictures and a blog of what’s happening.  Only people with the page information that you provide them with can view the site, and you can have a family member or friend provide the updates if you’re not available. It will save you a lot of time, phone calls and energy that you’ll need for your child, and your child can help design the page before going into the hospital, and even post his or her own updates before and after surgery!

 

A pre-surgery shopping list might include items like:

¨ Flushable wet wipes (sometimes a bedpan is necessary for a day or so…), disposable, rinse-free cloths (like Comfort Bath), which you can heat in the microwave (they now also make the Comfort Shampoo Cap for a water-free shampoo). Liquid shower gel may be better than regular soap (which is harder to rinse off) for a sponge bath.

¨ Ginger ale or coke, Popsicles, Jello, crackers, etc., in case your child is queasy, something that can last for several days after surgery. Loss of appetite is common, and can last for awhile. Meal replacement drinks can be helpful, if your child will take them. Many are made especially for children now.

¨ Ice packs are often recommended for after surgery. There are many types available in drug stores, including gel packs that you just keep in your freezer.  Put one in before you go to the hospital so it’s ready when you get home.(You can also use a bag of frozen peas, which conforms to the area, then just refreeze after use. Just be sure to mark the bag. Since it will be in and out of the freezer, you won’t want to cook them).

¨ After ice is no longer necessary, your child may prefer heat packs.  Again, there are many types available in your drug store, including microwavable packs.  (Another handy item for when you’re ready to use heat: socks filled with raw rice (not instant) and tied at the top are microwaveable and make great heat packs. Use different size socks for different areas! (Soccer socks can make great heat wraps for around the neck and shoulders!  Heat for 1 minute, then a little longer if necessary.  These can be good for parents with sore backs and shoulders from lifting the patient!).

¨ You may want to purchase some gift items for the child having surgery, as well as for siblings, and have them wrapped and ready for times when your child(ren) need them.  They don’t have to be expensive: craft items, jig saw puzzles, a little gift bag filled with snacks and candy, a new DVD the family can watch together.  Things that relieve boredom can also help relieve pain and discomfort by distracting you child for a little while.  It’s also important to remember that siblings need to know that they’re still important, especially when so much of your attention is going to the “patient”. 

 

 Packing for the Hospital

¨ Pack a digital (or disposable) camera and get pre and post-op snapshots, plus photos of all the wonderful hospital staff. Have duplicates made and send the hospital a set, too!  You may want to put some of the photos on your Caringbridge.org page, too!

¨ Bring a favorite movie to the hospital, labeled with own name. (Note: Double check with the hospital to make sure a DVD will be available for your child. Not all hospitals have them.)

¨ Bring a favorite soft blanket or pillow for cuddling with.

Even if your child is scheduled for same-day surgery, it doesn’t hurt to throw into a bag, toothbrushes, toothpaste, a clean t-shirt, and other essential items, just in case it

¨ turns into an overnighter.

¨ Bring along a few snacks. You may not be able to get away for meals. Also pack any medications you might need, for headache, backache, etc. The experience can be both emotionally and physically stressful.

¨ Think ahead to what your child will wear home from the hospital. If the arm will be in an immobilizer or cast, you’ll need something wide If the leg will be in an immobilizer or cast, you will need wide leg, stretchy shorts or sweats that will fit over it, and loose-fitting socks and slippers can be of help, too. You’ll also need underwear that can fit over the bandages, etc., so make sure it’s stretchy enough!

 

The Ride to the Hospital

¨ Some families will be leaving for a long car trip, others to the airport for a flight to get to the hospital.  When leaving early in the morning, make sure your child has plenty of blankets and pillows in the backseat (you’ll need them for the ride home, too)...

 

In the Hospital

¨ Make sure you have a pad and pen with you to write down any instructions the medical staff might give, and to write down questions you might have. Keep track of when pain and other medications are given and when your child will be due for the next dose. There are times when you will need to make sure your child gets his pain medication on schedule. You don’t want to wait until your child is hurting.   Write down the name of the day and night nurses, so you don’t forget!

 

 

The Ride Home

¨ Everyone agrees – bring plenty of pillows for the car, for the ride home. You’ll want to cushion the area operated on, and make the patient as comfortable as possible. Another helpful item is a small plastic garbage can and some plastic liners, just in case your child gets sick on the way home. Keep some towels and wet wipes in the car, too.

¨ Chele has plenty of experience here and, besides collecting all bed pillows in the house, advises that driving home, take it slow, avoid railroad tracks, and time your departure after your child has had pain medication and it has begun to take effect.

¨ Even though it can be difficult, be sure to use the seatbelt!

 

When you Get Home

¨ If possible, have someone set up the bed for the patient so it’s all ready for your arrival. We usually have Nicole sleep on the living room couch for a few days post-op. It’s a good height for her, and there is an easier path for her to get to the bathroom with her walker. There is also room there for me and her younger sister to camp out with her. We have the couch covered in several soft quilts, plenty of pillows, and that same plastic garbage can nearby, as nausea can continue for several days post-op. I usually wind up sleeping near Nicole for several days post-op. Depending on the recuperation and type of surgery, parents have been known to “camp out” for much longer periods.

¨ According to Chele, the day you come home from the hospital, and the next day, are the worst, so be prepared. She also advises that it will probably be between 5 and 7 days before you get a full night’s sleep, so nap when your child naps, sleep when your child sleeps, and have plenty of coffee on hand!

¨ The first few days post-op, make sure that pain medications are given on schedule. Once pain starts, it’s harder to control.

¨ Remember that this is a hard time for siblings, who are bound to feel frightened when they see their brother or sister in pain, and left out and forgotten when their needs have to take a backseat to a post-op patient

 

 

NOTES:

 

Questions for the surgeon: _______________________________________________________________________________

 

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Shopping list - foods, drinks, gifts, ingredients for make-ahead meals, etc.:

 

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Packing list - items to take to hospital for your child, and for you.  Make sure to have lots of pillows, cozy blanket, and small, plastic garbage can with bags in case of nausea and vomiting post-surgery.  Make sure change of clothes for your child post-op takes into consideration type of surgery and if clothing has to be put on over cast, immobilizer, fixator, etc.  Even if surgery is scheduled as same day, take along a few necessities for yourself, in case your child has to stay overnight.  Toothbrush & paste, extra t-shirt, any medications you need, a book, charger for your phone, etc.

 

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Reprinted from The MHE Coalition Newsletter #10, June 2002, Susan Wynn, Editor.  Revised 2013.

 

 

​© 2015 by MHE Coalition.

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Thank you to Nicole Wynn for designing our logos and contributing her original artwork to our website and our hand-outs.  Nicole is a talented graphic designer who just happens to be living with MHE... you can visit her website at nicolewynn.net

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