Preparing for your child’s surgery: a roller coaster of emotional twists and turns

Last month I was running around like, as the saying goes, a chicken with its head cut off (horrible expression, really!). It reminded me of how I felt just prior to giving birth, during what is called the nesting phase, or anytime I am organizing our family to head out on vacation. I had lists in every room of the house, to which I added more every day. My plan was to stay in the hospital room with our 23 year old daughter, Talia, for two nights following double jaw surgery, genioplasty and wisdom tooth removal. The surgery to correct her overbite had been a long time coming and running around was likely a good distraction.

Planning ahead made a huge difference in her readiness for surgery and ours too. So, I thought I’d share some of what we did with you, in case you ever need to know how to prepare your child for surgery or any other big procedure.

  1. Research. Talia checked out websites which allow patients to rate and make comments about their experiences with specific doctors. She even asked her surgeon’s staff to connect her with other patients in her age group who had recently undergone the same or similar surgery and they did. Other than emailing and chatting over the phone with several people, including some she found online, we met up with three families. It was helpful for my husband and me to chat with the parents (and make lots of notes that came in handy later on) as she chatted with similar aged peers. Even though some of what they shared was not very comforting (such as difficulty when breathing while so congested), at least Talia knew what to expect and that she wasn’t alone. She also texted these new friends soon after surgery, shared war stories and got helpful advice about what to expect along the road to recovery. This too normalized the experience for her.
  2. Know what to expect. Knowing what to expect even helped us organize our environment for Talia’s return home. We rearranged our living room furniture (as it turned out, it looked better than before) to accommodate a large recliner since we knew that Talia wasn’t going to be able to sleep lying flat for a couple of weeks after surgery and that it would be easier for people to visit her in the living room rather than cramped in her bedroom
  3. We kept a running list of items to pack. Some of what we included that you may not think of at first included a mini portable plug in fan. If you’re lucky enough to be placed near a window in the ward, it may not open at all or enough to let much air in. It can get pretty stuffy in the rooms so having a fan to cool Talia down proved very helpful. Also, lotion for foot massages was appreciated. A mini portable caddy to hold other items on the bed side table including hand sanitizer, anti bacterial wipes, toiletries and a soft washcloth (the ones in the hospital are typically bleached and scratchy), kept items organized and accessible.
  4. Prepare siblings in advance. If you have other children, talk to them in advance about what changes to expect and if they’re younger, expect that they might be a little put out at the attention his or her sibling is receiving, even if they are mature enough to intellectually understand why. If possible, have one parent (or a good friend) spend some special time with the other child or children while you focus on the patient.
  5. Another place to connect with others. We met some lovely people in the surgery waiting area. Everyone is waiting for someone they love to either go in or come out of surgery and this is a huge connecting factor. Don’t be shy, if you’re up to it, to chat with others. It passed the time and was comforting.
  6. Share your experience to help others. Talia wanted to pay it forward after receiving such amazing support from her new friends and also wanted to stay in touch with old friends and family without having to email the story to everyone (she wasn’t able to talk) so she started a blog before the surgery and updated it regularly so that followers could join her on her “adventure.” After a few weeks, she was even brave enough to post before, during and after pictures. Blogging was beneficial to her in that it was cathartic to vent her feelings along the way and to others too who were embarking on their own journeys.
  7. A little help along the way. Along with blogging, Talia was enterprising and found an augmentative communication program on her computer so that instead of having to communicate her needs to us in writing, she was able to type what she wanted to say and have the computer regurgitate the information. It was incredibly funny at first but we became used to her new “voice”. And because she couldn’t talk at first, (and even if the patient can), we gave her a bell to ring when we weren’t in the same room and she needed us, which was a lot.
  8. Clear your plate as much as possible. After not sleeping for the first two nights post surgery (the hospital chair was upright which made sleeping difficult), I was exhausted. This, along with a rigorous schedule of antibiotics, mouth rinsing and hourly liquid feeding through a syringe with a long rubber tube, I was certainly glad not to have to put my energy into anything but caring for my daughter. If you’re self employed and can take time off, or able to take caregiver leave, I’d recommend doing so.
  9. Listen to the patient. We respected Talia’s wishes not to have people visit too soon. As well meaning and generous as visitors are, she tired very easily and wasn’t up to people seeing her at first. And when they did, we encouraged short visits.
  10. Be patient with the patient. During the recuperation process, you and your child will take a roller coaster of emotional twists and turns. Fearful and frantic feelings turn to relief as your child shows signs of improvement while your child shifts between feelings of fragility and frustration to sadness (even mild depression), crankiness and eventually gratitude to be feeling better.

When all is said and done, I know now even more than before, the importance of proper research, planning ahead, patience and appreciation of having good friends and family to count on for support.