This post is written and originally posted on Heart Savvy Momma. Heart Savvy Momma was created by Erica Thayer, co-founder of Project Heart.
The day that has been looming on your mind, in varying degrees of anticipation and anxiety, since the moment surgery was first mentioned. I felt terrified just imagining my little boy being rolled through those OR doors. It’s hard not knowing exactly what the outcome will be each time. Even after multiple surgeries, it never really gets any easier. But, at least you have an idea of what to expect. So, here’s a run down of events that you may encounter leading up to heart surgery day.
Typically, 1-5 days or so before heart surgery day your child will have a pre-op appointment in the cardiology clinic (unless they are already inpatient). At this appointment, your child’s health will be evaluated to ensure they don’t have any illnesses or infections. Usually this includes a nasal swab, a blood draw, and a typical check up. If your child has had any cold symptoms this is the time to report them. Even a mild cough could be an indication of an upper respiratory infection. Any illness could cause complications during recovery. Also, as a side note, if your child has any cavities they will need to be filled before this appointment. Even cavities are considered a risk for infection.
You will likely have an opportunity to talk to your child’s surgeon, unless scheduled in a separate appointment. So, bring any questions you have. If you need help thinking of good questions to ask your surgeon you can take a look at my blog on that here. Your hospital may have a specialist available to help talk with your child about their heart surgery day in a child-friendly way. I highly recommend this!
Most hospitals will ask that you arrive about 1 hour prior to your scheduled surgery check-in time. At check-in they will take vitals and put you in a surgery holding area. At age 3, when Calvin had his Fontan surgery, he was nervous in the waiting room. Once we went to the check-in holding area he actually had a lot of fun. The nurses brought him markers to color on his bed sheets – which he thought was the best thing ever. They gave him a doctor kit and he proceeded to check vitals on all the doctors that stopped to see him. He also rode up and down the hallway in a little car.
As it got closer to the time for him to go back to the OR his nurse gave him a little dose of Versed. This medicine is amazing because it decreases anxiety and makes them a little giggly and loopy. As a bonus, it also causes short term forgetfulness. Calvin didn’t need this medicine for his surgeries as an infant, but it was pure gold as a toddler. He was laughing doing a little goofy wave as the anesthesiology team carried him into the OR. It was much easier him (and me!) to have him not be scared. After surgery he had no memory of being separated from us.
It’s so hard to wait and wonder what is going on in that OR. For us, we were very open about allowing friends and family to come visit and help pass the time. It was a great source of support and also a great distraction. If you do allow people to visit with you know that well-meaning friends and family are going to ask you exactly one-thousand times, “So, what exactly are they doing during this surgery?” The first few times I happily described normal heart anatomy, Calvin’s unique heart anatomy, and how this surgery was going to help him. To really understand the surgery it ended up being about a 10 minute explanation.
After I had explained it 3-4 times I got a little tired of saying the same things over and over again. I ended up finding a few pictures of Calvin’s heart condition and his surgery procedure and saved them on my phone. That way I could easily pull up the photos during conversation. If you go to Project Heart’s Facebook page and look at their photo albums there is an album of many different heart defects. There is also another album containing a few surgery procedures depicted. It’s a great resource for visually helping loving friends and family understand what’s going on.
While you’re waiting (and explaining to everyone you know what this surgery is doing 😉 ) a nurse will call you with updates periodically so you have some idea how things are going. The calls were all very brief but at least gave us the momentary assurance that things were going as planned.
After heart surgery your child will likely be brought to the Intensive Care Unit (ICU). These specialized units often have different names at different hospitals PCICU – Pediatric cardiac intensive care unit, CVICU – cardiovascular intensive care unit. They all mean the same thing. After surgery is finished it typically takes an hour or two (or three!) for the staff to get your child settled in the ICU. They have to hook up a ton of IV lines and transfer from the OR support equipment to the machines in the ICU. Once your child is settled they will allow you to come in. The first 24 hours post-op are still critical, but soon you’ll hopefully be on the road to recovery.
Read more from Heart Savvy Momma here!