When Your Child Is Having Surgery 5

When you find out your child needs surgery the heartbeat of worries merges with practical preparation and to do’s. Here are tips from my Mom experience ranging from simple outpatient surgery of ear tubes, tonsils and adenoids to an extensive birth defect repair that involved a week long stay in PICU (pediatric intensive care).

Preparing and Supporting Your Child

Think about what you will tell your child in preparation for the surgery based on their age, personality, and what their level of wellness and awareness is.  Explain in a simple, age appropriate way that they will be going to the hospital so the doctor can fix a problem. Your doctor and hospital may have suggestions. Many children’s hospitals allow you to take your child for a brief visit to see what it looks like ahead of time. Think through whether that is likely to help or if it might raise anxiety.

My son was two years old when we found out about his life threatening birth defect that needed to be repaired as quickly as possible. We used some books like Curious George Goes to the Hospital to discuss the basic concepts with him. We told him he would feel yucky for a while afterwards but then his ouchy would be all fixed. My mother got him kid sized doctor’s medical scrubs which he used along with his pretend doctors kit before and after to express himself.

If your child will be staying overnight in the hospital, I strongly recommend an adult staying with your child if at all possible. In addition to being comforting and reassuring to your child, it is difficult for hospital staff, however well meaning, to stay on top of the special needs your child has when caring for multiple children. Most children’s hospitals encourage this now and have facilities set up to accommodate an adult staying over.

Think about what the experience will be like for your child and how you can ease their discomfort. For example, you might discuss with your doctor when an I.V. is inserted and ask if there are options such as them falling asleep with a gas mask or the nurse using “magic spray” e.g. numbing agent first.

If your child has special needs such as sensory issues or speech challenges, think through how that might impact their reaction to the hospital experience. Discuss the issues with your regular therapists and the hospital to see how they can help with your child’s experience.

Be prepared that after surgery and in the weeks of recovery to come, your child’s mood may vary. Children can heal so quickly but they are likely to tire out faster, get frustrated quicker, and depending on their age and personality may express anger. It’s important to let them express their feelings. Some time with friends and family who are especially great with kids and have a good sense of humor can be a lifesaver. In some situations, a couple of sessions with a pediatric psychologist or counselor may be helpful.

If you have other children, plan for their care, how you will explain the situation to them, and give them whatever support and time you can in tandem with your sick child. See below for ideas for setting up your support team of friends and family who can help.

Medical care and health insurance

Ensure your comfort level with the decision to have the surgery, the approach used, and the doctor and hospital or outpatient surgery center you have selected. For more complex situations, online research can be helpful, but use highly respected web sites such as the Mayo Clinic, American Academy of Pediatrics, etc. Bear in mind that each situation is different and online sources may share worst case scenarios that could unduly scare you. Many surgeons have a nurse available to answer questions which can be very helpful. Your pediatrician may also be a great resource as you work through your concerns.

Check your health insurance coverage, making sure you understand what is covered, whether special pre-authorization procedures are required, and whether your doctors and hospital are considered in network. Never assume anything. Write down the date, time, insurance representative’s name (and ID# if available) with notations of what they told you. If possible, ask for written confirmation so it cannot be questioned later.

If you end up at the hospital in an emergency situation, call your health insurance company as soon as possible. It may be easier to get authorizations and exceptions toward the beginning of a situation when you have easy access to the hospital staff, doctors and specialists involved.

If the surgery came about from visits to specialists, call your pediatrician to let them know the situation and surgery recommendations. Your pediatrician can be a great support and resource, and if your child will be staying at the hospital overnight, they may visit you there.

Setting Up Your Support Team

Especially if your child will be staying overnight at the hospital you will need support from family and friends both emotionally and pragmatically. Take up their offers of help, this isn’t the time to be worry about taking people’s time! If it’s a serious situation in which you are likely to be feeling very emotional, do what you can to make sure the people who are with you at the hospital are supportive and not likely to add to your level of aggravation.

If there are some family members or friends who need to be involved but are likely to fray your nerves further, try to think of ways they can help you without being at the hospital. For example, could they get food or something special for your child to have when they get home? Could they set up a schedule of when friends and family will help in different ways throughout your child’s recover? It is helpful to rotate who helps when so that it is spread out. If your child’s recovery takes six weeks and everyone helps while you are at the hospital, you don’t want to regret at week three that no one is around to help you.

Logistics – Questions to Help You Prepare

Talk to the doctor’s office and hospital to find out what to expect, for example:

• What will your child’s experience be from when you arrive till they receive the anesthesia and then when they wake up? What does the hospital or surgery center do to ease the nervousness of the child?

• Will you have the opportunity to meet with the anesthesiologist before the surgery? Do their anesthesiologists specialize in children? Does the anesthesiologist stay in the room during the whole surgery? If not, who supervises the anesthesia?

• How soon do they let a parent be in the recovery room? How do they make children feel more comfortable when they wake up from the anesthesia?

• What recommendations are they likely to have after surgery for your child’s diet, activity level, etc. that you should plan for?

• Will there be different kinds of therapy recommended for your child’s recovery? Could alternative therapies be helpful in your child’s recovery? This also helps you prepare if you need to quickly vet different specialists or therapists your child will need to see.

If an overnight stay is involved:

• How long do they anticipate your child being in the hospital?

• Do they provide a sleep chair or other accommodation so that a parent can sleep in the hospital room with your child? I strongly recommend a parent sleep over to comfort your child and to watch over his or her care.

• Will your child be sharing their hospital room with another child?

• What are visiting hours? Are they flexible for immediate family? (Many hospitals allow the parents to be in the room at any time.) What is the policy for siblings visiting? Minimum age requirements?

• Do they have recommendations to prepare your child and you for the surgery and hospital stay? Do they have a packing list?

• What will be in the room in terms of bathroom, entertainment/TV, etc.? Ask if there are additional charges for anything that you should be aware of, especially if insurance is unlikely to cover it.

• Discuss any dietary concerns for your child, for example if they have allergies or there will be other limitations on their diet while recovering. (Obviously anyone will have a light diet after anesthesia.)

• Will you have access to a refrigerator? It’s handy to bring some food, especially for the adult who is staying over and your child if appropriate (though they usually won’t have much appetite for a couple of days).

• If you belong to a church or synagogue, your minister, priest or rabbi may visit you in the hospital if you let them know ahead of time.

Handy things to consider bringing:

• Favorite lovey, small blanket.

• Depending on your situation, also pack some small toys and an iPad or other device mainly for entertaining them before the surgery. Bear in mind that they probably won’t be up to usual activities after surgery. For this reason and to avoid losing anything, probably best to avoid things with many small pieces or complexity.

• Soothing childrens music and classical music (ensure you have on your device that you bring) along with headphones if needed.

• Gentle lotion to soothe skin that might be a little tender from bandaids, gauze, IVs, etc

• Favorite story books, leaning toward those that are peaceful and are associated with love or sleep time

• Healthy snacks and meals, especially for the adult who will stay there (many pediatric areas of hospitals give families access to a refrigerator)

• Whatever clothing and essentials the adult who is staying over will need, including a mindless novel and/or magazines to try to distract yourself.

• Toothbrush, toothpaste for your child, adult(s), and other essentials like soap and shampoo.