You have been told by one of your child’s doctors that surgery is recommended to resolve an issue, what do you do now? In my experience this recommendation was never unexpected. My son was diagnosed with club feet prior to birth, I had weeks of preparation for his birth and knew that he would be placed in casts within a week after hospital discharge and a few months later he would have an outpatient surgery.
Of course life did not happen that perfectly. We had other medical issues which delayed discharge and the outpatient surgery ended up being an overnight, but I still knew it was coming. A few years later I asked his orthopedic surgeon if surgery was necessary again; she asked if we ever suspected a tethered spinal cord. The following week we were scheduled for his third spinal MRI after which, spinal surgery was recommended. We had been researching the pros and cons of spinal surgery for months so, again, it was not a surprise. A few months later we did need foot surgery again, as a mom I knew his feet were not correcting well. A year later I called the orthopedic surgeon to up our appointment, the feet were not right again, I was concerned surgery was the only option…I was right.
You know your child better than any of the doctors so learn to teach the doctors about your child because in many cases they may never see a child like yours again and you have the ability to truly express how great, fantastic and unique your child is. If you think surgery may be an option, inform the doctor, ask their opinion, ask another doctor if you want and then think of all the pros and cons regarding the surgery and make an informed decision. If a doctor does mention surgery and you are not prepared for this option to let them know you would like more information, a second opinion or at least some time to think about it. Unless the surgery is an emergency you have the right to take some time to prepare yourself and your child.
Typically you are given a few weeks’ notice before the surgery in planned, I tend to call the doctor to speed up scheduling. Take this time to familiarize yourself and your child to the hospital and the expectations of the day. My son is still young and not as aware as an older child but he does have an older brother so I take the time to explain to my other child what his little brother will have happen, how his daily schedule may be changed and why we are doing surgery. Let family know and if you want their assistance see who may be able to help. For our family we notify my younger son’s daycare staff, my older son’s teacher (to give her warning in advance for anxious behavior on his part), our places of employment and family. We ask the doctor when he will be clear for daycare so my husband and I can take the appropriate amount of time off work. We consider and ask advice on how to handle issues such as bathing, riding in a car seat, sitting chairs, sleeping to ensure that we are prepared to handle post-surgery care (which involves casts for us a lot of the time). See if it is possible to preregister for surgery by either calling the hospital or online, this can save you time the morning of the surgery. Make a list of things to take to the hospital both for yourself and for your child and ensure that the hospital does not have any restrictions. I am packing snacks, drinks and something to read for myself and books, toys, a sippy cup and snacks for my son. Don’t forget to pack any medications your child takes.
The night before surgery make note of when you are to stop giving your child food as well as when you have to hold off on clear liquids. If you have to travel to a destination you are not familiar with review the path and give yourself plenty of time to arrive to the hospital. You may also review the hospital’s website for information on what to expect, some children’s hospitals have videos the kids can watch so they know what to expect that day. Ensure your bag is packed and you have medications, insurance information and identification for your visit. Be as calm as you can to help reduce your child’s anxiety and everyone should get a good night sleep.
When you arrive at the hospital you may need to check in and finish registration, this is when you will supply insurance information and your identification and sign documents. Your child will be given an identification tag and you will have a choice as to where it goes, my son loves to chew anything so if possible we had it placed on his legs, if he was going to receive leg casts of course we had it go on his arm. Any issues with billing or parking should be discussed at this point in your visit. Next you may be directed to surgical waiting, or you may go directly here to check in until the staff is ready to take you and your child back to pre-op, there may be a limit to the number of visitors that go back so check with hospital staff before you arrive with family in tow. In pre-op is where you will meet anesthesiologist, nurses, doctors, etc , who are there to help you and your child as well as prepare your child for surgery.
If it is a teaching hospital, like the one we go to, you will typically meet two of each type of staff. The resident comes in first then the attending staff later. Help the hospital staff by informing them of what makes your child unique, they will ask a lot of history questions and do your best to answer questions and if a procedure was done in the hospital prior ensure they know to review prior notes. Items I have brought to the attention of staff are:
- Ability for my son to get things off his hands (important for ID bracelets and IV lines)
- Past difficulties with anesthesia
- Ability to use a cup, sippy cup, or bottle and what drinks he dislikes (this is important for after surgery)
- My son’s personality around strangers
As I said before you know your child the best so think about what is most important for someone to know about your child when you are not around and let them know how to best care for your child while they are in the hospital staffs care.
After your child goes into the operating room you will be directed to return to the waiting area and be told not to leave. Some people bring most of their family, others have just a spouse or perhaps another child, some are like me and sit alone. Each person knows how they can best deal with the situation and how they are most comfortable. I typically bring something to read and a few snacks so I don’t need to even run to the vending machine. If you do need to leave the room and you are alone inform a staff member that you are leaving and insure they have your child’s name and yours written down, if you have a cell phone give them your cell phone number so in the event that the doctor needs to speak to you they can reach you even in the restroom. If you wish updates on your child’s progress you may be able to ask the staff to check on it, sometimes a message will be given to you periodically, especially if it is a long surgery.
When your child is out of surgery you will be notified and will have an opportunity to speak to the doctor. Sometimes this is a quick chat in the waiting area, sometimes it is over the phone, other times you are escorted to a conference room. These are doctor preferences and do not mean the conversation is bad or good news and I am sure if you requested a personal conference room the doctor would grant that request. If surgery is outpatient, you will be able to go back to recovery once your child has awakened and had something to drink to sit with them while the anesthesia wears off. If your child’s surgery requires an overnight stay you may be given the room number and be asked to proceed to the room and your child will meet you there shortly. Remember that you are on hospital time and shortly means as soon as we feel your child is well enough to be moved and could be an hour or more.
If you are having same day surgery, stay as long as you feel is necessary in the recovery room. Ask nurses as many questions as you can think of to ensure that you will know what to expect at home and when a call to the hospital or your doctor is warranted. For an overnight stay understand that you will most likely get little to no sleep, my son is notorious for getting wires moved and causing his monitors to beep hourly or more frequently. Know when shift changes are so you can ensure you are in the room to meet the next nurse, ask if they have any questions as many nurses are curious about what brought you to the hospital and what you hope to gain from the surgery. Know where to get food for yourself and if you have to leave your child alone stop by the nurses’ station to let them know you will be back shortly. Know your child’s medications and their individual schedules, some like antibiotics require strict doses, others such as pain medications typically are as needed at least so many hours apart. If you don’t think your child needs pain medicine on schedule ask if it can be delayed. If you feel your child is not being helped by the pain medicine, let your nurse know so they can ask about alternatives. You know your child and how they show pain.
When you come home with your child make any adaptations necessary, ensure you have their medication on hand and know the dose schedule and make any follow up appointments with their doctor. Recovery does not end when you leave the hospital but you may be surprised at how quickly your child returns to their old self.
Submitted by: Meshell LaBaun