Tips:

Dealing with Your Child’s Hospitalizations and Surgery

by Kim R

  • Remember always that you are your child’s best advocate.
  • Do your homework.  Gather all the information you can in advance of the surgery, so you know what to expect and are comfortable with the decision you have made.  Consider asking a trusted friend to conduct medical research for you, if you are not able to do so.  Your hospital should have a medical library and a medical librarian.  Google with caution.  Don’t believe everything you read on the Internet and be aware that a limited amount of information can be a dangerous thing.
  • Keep a notebook and pen with you during all meetings and the hospital stay, write down your questions and take notes.  Maintain a daily journal to record progress on medical conditions, medications, treatment, and blood work during the hospital stay and recovery period.  Not only will this help you remember important information and recognize progress, but it will have a positive effect on the way the medical staff treat you and your child.
  • Keep in mind that medicine is not an exact science.  It is a “practice,” which requires a series of educated guesses, trial and errors.  The medical staff, while clearly experts in their respective fields, are only human and can make mistakes.
  • Establish a respectful relationship with your child’s doctors and nurses.  Respect leads to better communication and quality care, which is in the best interest of your child.
  • Don’t be afraid to ask questions and to ask physicians and nurses to explain and/or spell medical jargon.
  • Don’t be afraid to ask for a second or third medical opinion about the need for surgery, any treatment alternatives to surgery, and the timing of the surgery.
  • Make sure your pediatrician has privileges at the facility where the surgery will take place.  If he/she does not, ask how she will be kept informed.  Be aware that you may be the one who has to keep your pediatrician in the loop.
  • Talk to your insurance company to ensure the facility AND surgeon AND anesthesiologists are in network.  Be aware that in some cases a facility may be in network, but a medical specialist practicing in that facility may not.  Confirm your deductible and any patient co-pay/financial responsibility.  Determine any preliminary requirements and the need for pre-authorization.
  • Ask if there will be someone from the surgical team available to keep you apprised of progress during the surgery and how often you will receive updates.
  • Consider using carepages.com to keep family members up to date.  It is less time consuming than calling everyone and it can be difficult to use your cell phone in certain areas of the hospital.
  • If there are complications, ask for time to make difficult decisions if you feel you need it.  However, be sure to ask if any harm can occur if a decision is delayed a few hours or a few days.
  • Find out in advance what to expect after surgery.  Will your child be on a ventilator?  If so, for how long?  How long before you can lie in the hospital bed next to your child or hold your child?  You want to be prepared for how your child will appear when he/she comes out of surgery and any limitations.
  • Ask if the surgical team will allow parent assisted anesthesia, so you can be with your child as he goes under anesthesia.  Ask if you can be at your child’s bedside in recovery before he awakes, so your face is the first face he sees.
  • Ask if you can stay in your child’s room over night. Ask how many people and who is allowed to visit.  Understand there may be good reasons for any limitations.
  • Ask for a private room if at all possible.  Determine any financial implications that may result.
  • Know that you are entitled to personally examine and review your child’s medical chart.
  • Ask if you can listen or participate in rounds or interdisciplinary team meetings for your child.
  • Get to know your nurses.  You will find the physicians, surgeon and other medical specialists have limited information and interact with your child less than the nurses do.  Nurses often have the “big picture” and have a broader range of information about your child.  Also, nurses work on the front lines and are often the ones who “save” children’s lives during times of crisis.   Also, if your child is in the hospital for extended periods of time, getting to know your nurses and being pleasant with them will motivate them to request your child for subsequent shifts.  This gives you and your child some continuity and improves the care and attention your child receives.
  • Stay on top of pain management.  This is the one area where hospitals routinely fall short.  How will your child’s pain be assessed and managed?  Who is responsible for pain management? Record in writing when pain medications are given, so you know when they have been delayed and are needed.  Consider asking for Tylenol to help get your child through periods of time when pain killers are wearing off.
  • Consider asking for a numbing agent such as Emla or LMX before (apx. 30 – 45 minutes before) IV’s or arterial lines are inserted or before blood draws.  Also, some hospitals have a freeze spray they can use to numb your child’s arm or hand right before a blood draw or IV.
  • Keep a list and monitor all medications and specific doses given to your child.
  • Personalize your environment. Bring some comforts from home for you and your child, such as a pillow, favorite blanket, pajamas or cherished toy.  Depending on your child’s age, you may want to plan some entertainment to keep her busy as she recovers but is constrained to bed.
  • Ask if the hospital has wireless internet service available in patient rooms.
  • Ask if there is a laundry facility on the floor or in the hospital for patients.
  • Ask how you can be involved in your child’s care.  Can you change diapers, clothes, potty, or bathe your child?  Can you feed your child or help administer medications?
  • Ask your nurses about the protocol for measuring food intake, bowel movements, and urine output.  Ask for guidance on how to read and understand your child’s monitor and any other equipment in the room.  It will help reduce your stress if you understand what the alarms mean.
  • For extended recovery periods, consider asking for Child Life services.  They will provide toys, art projects, and other activities before and after surgery.  They can also help create a diversion during blood draws. You may also consider music, pet, or art therapy, if offered by your local children’s hospital.
  • Be sure to take time to eat and rest.  Parents may not be allowed to visit their child at the hospital if they become sick.  So, your health is very important.
  • If you belong to a church, keep your priest, pastor, or rabbi informed.  Ask for your child to be placed on any available prayer lists.  If you do not belong to a church community and want spiritual counseling or support, the hospital will have chaplains available to you.
  • Take any concerns about patient care to the nurse manager.  If the nurse manager is unable to resolve the problem, consider asking for a patient advocate or ombudsman.
  • Consider writing a note of thanks or write a personal note about exceptional patient care, which can be included in an employee file.  Participate in any surveys so the hospital can identify areas for improving care.
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