The following article is reprinted with permission from The MHE Coalition from The MHE Coalition Newsletter No. 10, June 1, 2002
MHE and Me
MHE Surgery
Some helpful tips and advice from
families who have been through it
With several new members facing their children’s first surgeries, we decided that this would be a good time to revive the idea of an MHE Surgery Handbook.  Starting this project on a small scale, I asked for input from YahooGroups members. Our thanks to JoAnn, Cassie, Kate, Karla, Max, Chele, and Suzanne for sharing what they have learned through their children’s (and in some cases their own) surgeries.  We would love to get more tips for the MHE Surgery Handbook for both children and adults, including specific hints for different procedures (i.e., fixators, hip surgery, arm surgery, hand surgery, etc.).  Please send them to me at mheandme@yahoo.com, or by mail to 14 Stony Brook Drive, Pine Island, NY 10969.  Thanks!  Susan Wynn

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.
* Suzanne says the one thing that most helped her son, Bobby, prepare for surgery was the hospital tour. The entire family participated in a tour of the operating and recovery rooms, and Bobby got a first hand look at the table, the lights, and the equipment,  receiving explanations of the procedures so that there was little left to the imagination and his fears were allayed. Several other parents have said that the pre-hospital tour is helpful for the whole family.
* Max advises families having surgery done at a large medical campus to 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.
* JoAnn found a wonderful website that features “You’re Having Surgery! A preparation guide and coloring book for pediatric surgery”.  This is available at http://cmc.mcg.edu/kids_families/kids/index.htm
* 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, and we try to send copies of both the book and coloring book, along with a stuffed animal, to young children scheduled for surgery whenever possible.
* 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.faculty.fairfield.edu/fleitas/hospital.html.
* Karla has a tip 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 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.   Cassie recommends speaking 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.  Cassie also recommends stocking up on Benadryl, 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 accomplish these normally easy acts.  This is something we wish we had thought of before Nicole’s first surgery. The logistics of getting in and out of the car, then having to carry her into the house were just things that never occurred to us, and it was very, very difficult.  We’ve gotten much better with practice, and Nicole is great at figuring out alternate methods of mobility.
* 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 a special cap for a water-free “shampoo, too). Kate suggests liquid shower gel, since regular soap is too hard to rinse off in 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.
* Cassie recommends bags of frozen peas to use as icepacks after surgery. (Just be sure to mark the bag. Since it will be in and out of the freezer, you won’t want to cook them).  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!).
* Think ahead to what your child will wear home from the hospital.  If you’re having arm surgery, Kate says that, since you won’t be able to pull things over your head, tops and pajamas that button are absolutely essential.  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!

Packing for the Hospital
* Karla’s list included some great ideas:  Pack a 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!  Bring a favorite movie to the hospital, labeled with own name. (Note: Double check with the hospital to make sure a VCR will be available for your child. Not all hospitals have them, as we found out when we went prepared with Nicole’s favorite tape). Bring a favorite soft blanket or pillow for cuddling with. Buy new soft slippers for your child’s hospital stay and give them as a surprise at the hospital.
* Cassie brings along her own feather pillow. Conor uses it when he needs it, either for comfort, or for extra propping, and Cassie uses it when Conor doesn’t need it. Cassie also brings along a supply of soda, and a book or video for her to watch for those times Conor’s sleeping.
* 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.
* 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.

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.