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Hearing that your child needs surgery, for whatever reason, is a scary venture for any parent. It doesn’t matter if it’s emergency surgery for the first time, or the 10th time and scheduled in advance, you’re going to stress heavily. Having surgery can create a scattered mindset that will slow your ability to process information and limit the amount you can process.
As parents, we can’t possibly anticipate every negative thing that can happen to our children, resulting in being ill-prepared for most eventualities. But when there’s the opportunity for some clarity of thought in advance of an operation, it’s critical that we ask all the right questions. Having answers to our concerns not only eases our worried hearts and calms our scared children, but allows us to plan ahead and optimize every aspect of their surgical journey. After all, surgery is only the first stage of healing for your child and you need to know what to expect afterwards.
Talking to health professionals of any kind can be very intimidating, especially when they hold your child’s life in their hands. Surgeons have had incredible amounts of schooling and training, so who are we to question them? To be plainly put, we are our child’s best advocate, and without us asking questions and making decisions based on the best information in front of us, the outcomes may not be as good as possible.
As always, the ideas I suggest are generalized so that you can use them no matter what the situation with your child. The following list is certainly not exhaustive; there are always more questions that can be asked, especially things that are specific to your child. But if you don’t know where to start, this is a firm basis.
1. What are the chances of death both during and after the surgery?
• While some procedures are considered more “routine” than others, every single time someone has a procedure, the risk of death is there. Consenting to a procedure that has a higher chance of death requires deeper consideration than something that has a 0.5% chance.
2. How many of these procedures have you personally done? Over how many years? When was the last time?
• Don’t be afraid to ask the surgeon for their qualifications. After all, your child’s life is in their hands. Seeing their diploma on the wall isn’t sufficient to have confidence in their abilities. When I asked this of our daughter’s surgeon, she was very happy to outline exactly how qualified she was to do the procedure. And remember, if their answers don’t satisfy you, you can always shop for someone else in a different location.
3. Have you ever done this on a child with problems as severe as my child?
• Not all conditions are created equal; there are varying degrees of severity. Make sure the surgeon has a plan based on what is known about your child’s specifics and not just the “typical” or good case.
4. How many children had complications either during or after the surgery?
• This gives you insight into the overall success of what is being suggested for your child and helps you have realistic expectations if you decide to proceed.
5. How long has it been since previous kids had this procedure and how are they doing?
• Although your child’s situation is unique to them, this will allow you to see further into the future and also help you decide whether to proceed. If the answer is that most of the kids have had ongoing complications that have worsened their quality of life, then discussing other options might need to happen.
6. How long is the surgery expected to last? If longer than _____ hours, can we be updated part way through?
• Waiting is always the worst thing, it’s the time when our minds explode with the potentials, and we worry incessantly. Many surgeons will be willing to have you updated at intervals. In most situations, there are opportunities for a nurse in the room to call you with brief updates. I was an OR nurse, so I know this can be done.
7. Can I read the surgical report afterwards?
• You might not want to; it’s got a lot of details that are irrelevant to you. But if you’re one of those people who likes to dig into the nitty gritty of things, then ask for it.
8. Will you measure pre and post size of the organ being fixed?
• Depending on what’s happening things might get shorter or longer, or smaller. This information can assist you in determining how the function of the organ will change.
9. What is the range and average length of recovery?
• This is an important question for future planning. Based on your child’s current condition, the surgeon can give you a rough estimate of how long it might take your child to recover and be able to go home. For us that wasn’t enough; we also wanted to know best case scenario and worst case so that we could mentally prepare our expectations.
10. How much notice will we have before discharge to arrange for supply delivery to resume or home nurses to be scheduled?
• Don’t get caught being discharged with nothing in place, or you’ll be scrambling when you get home.
11. How long will we need to come for follow up after discharge and what does it entail?
• Discharge home isn’t the end of your journey. Various things will need to be monitored closely until the doctor is assured that things have normalized. Having a tentative schedule will allow you to plan your life (time off work etc.).
12. What do you do to prevent adhesions from forming?
• You probably don’t know what this is, but it’s a common problem resulting from any abdominal surgery. One of the coping mechanisms the body does is to create strings like spider webs (adhesions), and these can cause problems afterwards. Asking this question of the surgeon is just a little reminder for them to prevent this as much as possible.
13. What kind of pain control will my child have both immediately after and as recovery proceeds?
• Make sure they have narcotics (if safe) and multiple pain options both scheduled and for breakthrough pain post surgery. Regularly scheduled medications will help stabilize pain, and “breakthrough” options will help when it’s not enough. It is critical that this is set up ahead of time so that you’re not scrambling to get a hold of the doctor while your child writhes and screams in pain.
14. What are discharge criteria?
• The goal is to get home as soon as safely able, and if you know what must happen then you can work towards it. Must they be able to walk certain distances? Tolerate solid foods?
15. Should we explain anything other than that we are going to "fix their _____"? What about length of stay?
• Based on your child’s age and level of understanding, they should be told as much as possible without overwhelming them. After all, it’s their bodies and their life, so why shouldn’t they know as much as possible?
16. How soon after surgery can they resume eating?
• Depending on what procedure was done, it might be a long time before your child can even have a Popsicle. But of course eating is one of the most natural things we do, so it’s good for your child to know how long it will take before they can have their favourite foods again.
17. Can you consult with another surgeon if you run into trouble?
• Even the best surgeons can run into trouble; they never know exactly how things will be until they open you up. But you need to know if they have a back-up plan for when they’re stuck. Is there another expert they can consult with or call in?
18. Are there situations in which you would not proceed with the procedure after opening up and seeing the quality of the organ? What would those conditions be?
• Again, this just helps you mentally prepare for potential outcomes.
19. While the child is an inpatient, what are the expectations of me as a parent? If I am unfamiliar with something will adequate training be provided (I.e. how to mobilize effectively post surgery, what else can I do to make her recovery faster?)?
• Every hospital and ward has different parental expectations. We have been expected to sleep in her room and then we had to be firm with staff to explain that in order to care for her during the day, we needed a good night’s sleep which could not be had in her room on a cot. Some parents will want to sleep in the room; it’s all personal choice.
Navigating the surgical journey with your child can be extremely confusing and scary. Arming yourself with knowledge will significantly decrease your stress and confusion, enabling you to perform better for your child. Although approaching doctors with sometimes sensitive questions can be intimidating, you can find the courage to have these discussions with them. I guarantee you that in most cases, they will be impressed with you for digging so deep to help ensure the best possible outcomes for your child.