If you are "lucky" enough to be able to schedule your child's heart surgery, and it not be an emergency, the day you schedule it is a day you will never forget. The emotions of what to expect, how to prepare, what to pack, and anticipating what you and your child will go through is overwhelming.
Don't worry, we've got your back. We've been through it, and we are here to help.
So what should you expect for your child's upcoming heart surgery? Below we've outlined as much as possible so you know what to expect. If you have questions or would like to speak to someone who has been through what you are about to go through, please don't hesitate to reach out via our website contact form or email address listed on our website. We are here to help.
1. LOTS of Information
The day you schedule you will be inundated with information - what to expect, what to pack, if you are traveling - where to stay, and how to prepare. It is overwhelming and feels like a lot - because it is. Deep breath. One step at a time.
2. Pre-Op CT Scan
Depending on the hospital, they might want to do a pre-op CT Scan a few days or weeks prior to surgery. The good news? CT scans are FAST. The bad news? If you're child is young enough (usually 4 years old and below), they will need to be sedated for this procedure since it will be hard for them to stay still for it. Even with sedation, this procedure usually takes less than an hour and most of that is coming in and out of sedation. The actual CT scan takes about 10-20 minutes.
3. Pre-Op Day
The day before surgery, your child will have several tests at the hospital to make sure they are well enough for heart surgery. Most of this will not be new to you and will mirror a regular cardiology check up appointment. It's a pretty long day, so pack snacks and activities. Child life will come with new toys for your kid (don't be afraid to ask for child life if they don't stop by - they are game changers!)
First a nurse or doctor will take vitals and perform an EKG and an echocardiogram. If you were at the heart surgery stage, you are most likely very familiar with these parts, but if not, you can review each procedure here with tips for prepping for them.
After those tests, we start to stray from the typical cardiologist appointment.
Blood Work: Okay, here's the least fun part. Prepping for this one a few days before helps, but we won't lie, it's still not fun. Tell your child it will hurt but that it will be quick. Practice putting something tight like a rubber band around his/her arm and keeping the arm straight out for several minutes while there's a little pinch. A distracting toy or tablet can help distract depending on their age. Child life can help as well to prep them before and even stay while the blood is being drawn to help distract. However it goes, it will be over in less than 10 minutes and you and your child will survive!
X-ray: Depending on your child's condition, he/she may or may not need an X-ray. A parent can be present during this test to help hold them still.
Doctor/Nurse Discussion: After all the tests, this is when your heart will drop into your stomach as you discuss the next day ahead. During this portion of the visit they will tell you what time your child's surgery will be. The younger they are the better chances of getting a morning time. We were surprised to be given a 1pm surgery time with a 4 year old, but we survived a hangry kid and you will too!
Whew, now your pre-op day is over. This is your cue to go make apple juice popsicles for tomorrow morning. If you are traveling for surgery, pack popsicle molds and grab apple juice at the store. You won't regret it!
4. Surgery Day
Wake Up: The work begins the minute your child wakes up on surgery day. No food is no laughing matter with kids! Apple juice popsicles will be your best friend. If you have a long wait time, distract, distract distract - outside time, playing games, anything they want to do except eat food! It's not easy, but you can do it.
The Call: Since surgical schedules are ever changing and moving for emergencies, you will get a call when it's time to report to the hospital for your surgery. Hopefully, it will be around the time that you were given the day before. They might ask you to wash your child with a special antimicrobial soap prior to surgery. This one was hard to witness for my mama heart so get mentally prepared for this part.
Arrive and Check In: Once you arrive and check in, there will be a little waiting. Child life should come out with activities for your child. If they don't, you can ask for them.
Crafts and Paperwork: Once called back, your child will change into a hospital gown and will have some crafts or toys to keep them busy depending on their age. There will be a lot of doctors/nurses in the room, and it will feel scary. This part you just have to put your blinders on and move forward. They will say all the scary possibilities because they are required to and you will have to sign several waivers. Just let this go in one ear and out the other, sign it, and move forward.
Sleepy Medicine and Saying Goodbye: Then the nurses will give your child sleepy medicine. It does not taste good, and the nurses will depend on you to get as much down them as possible. So, give your child the medicine like you normally do at home, and don't be afraid to ask the nurses for items you might need - spoon, cup, syringe, juice, etc. Because it tastes so terrible, you will have one shot to get as much down as possible. Once the medicine is down, your child will start feeling really sleepy and silly. This is when the nurses and doctors will wheel your child away for surgery. It's okay if you cry. We did. They will give you tissues :) You will be okay even if it feels like you won't. We promise.
Waiting and Check Ins: Okay mama, this is the hard part. The nurses have your phone number and will check in at certain times of the procedure. The common nurse check in times are when surgery has started, when your child has gone on bypass, when they come off of bypass, and when surgery is over.
Tip: This may sound crazy, but plan out what you are going to do during surgery. it is a long time to wait. It might change, and that's okay, but you will be a bit of an emotional zombie, so it's good to have a tentative plan in place. Don't just go crazy in the waiting room. They have your phone number and will contact you. Our general plan was to go eat - we had the restaurant picked out and everything. We sat outside to soak in the sun and ate. After that our plan was to take a walk - so we walked. Have a plan, eat some food, rest if you can. Hang in there.
5. Post-Op
Please know that it will most likely be 1-2 hours from that last call that surgery is over and when you actually see your child. No news does not mean bad news. They are busy taking care of your child, so let them. Try not to fill the void with scary possibilities - stick to the facts of what you were told would happen until you are told otherwise.
First Visit: The first time you see your child is full of so many emotions - fear, relief, sadness, happiness.
Tip: Prepare yourself for this moment. Prior to surgery, look at pictures of kids after heart surgery. Learn what each tube means. Knowledge is power. If you know how each tube is helping your child, it will look less scary to you. Because each item has a function that is helping your child.
Tip: GO HOME - don't sleep in the ICU. We know this is hard - you don't want to abandon your child, but trust us, no sleep is happening in the ICU. Your child will have a well-trained nurse to take care of them. You will need your rest for when your child wakes up, and you are sleeping with him/her in the hospital. This is your sign to go home and get rest. You will need it.
Tip: While sedated, your child can still move and might open his/her eyes and mouth "mama" or "daddy". Tears might squeeze out of their eyes. It is heartbreaking, but take comfort that they will not remember it because of their sedation medication. This was a tough one for us and something we did not expect. So, here's your heads up.
Tip: You will be looking at an incision and not a scar for awhile. That was something that took us both by surprise and shouldn't have. The stitches are internal and then surgical glue is on top. So it just looks like a large red incision with clear glue on it for awhile. This will change with time, but you will have to endure this image for awhile.
Extubation: When it's time to wake them up, it's an exciting time! Please know that the nurses and doctors will need to fully wake your child up before taking the breathing tube out, so it can be a little uncomfortable to watch. Your child can get pretty angry, but strangely, that's what the nurses want because they need them to be awake and alert enough to breathe on their own once the tube comes out. Your child also isn't allowed water for a certain amount of time after extubation, and they are usually very thirsty. This is when the work begins for you and you will be glad you went home and had some sleep the night before!
Going home: The best day. No tips, just enjoy your little one and be amazed at how quickly they return to their old self. Kids are resilient and heal so fast. You are one of the lucky ones to get to observe that resilience and strength first hand. And know that whatever comes their way in this life, they can handle. :)