I have had a few parents contact me, telling me that reading about our journey through surgery has helped them in facing their fears of their child’s (or their own) upcoming surgery. It is kind of ironic that I started the blog with the intent to avoid surgery at all costs – and we tried nearly everything we could to do so (just read the past 4 years of posts!) But, after all is said and done, we were destined to walk the entire road, explore every aspect of treatment for this beast called Scoliosis. So, here are some tidbits/tips to help you on your journey:
1. Realize that surgery is no joke, but that it will not be as bad as you think. Get a good Doctor. Go the extra mile (or hundreds) to get to a hospital that is skilled in working with kids and get a surgeon who does a LOT of Scoliosis surgeries. Then, trust them to do their job right. We had our perfect match at Mott Children’s Hospital at University of Michigan (2 hours away), but do your research to find a good place near to you. Surgeries and techniques are getting better every day. It will not be easy, but it will not be as bad as you think. Just don’t let your mind go to those dark places…especially around your kids.
2. Keep smiling and distract yourself so you can be positive for your child until they can’t see you anymore…then, you can do what you need to do. When we were faced with the final “see you later” until after surgery, when they started wheeling my first born down the long white hall, I started to lose it. But, I sucked in the tears, slapped a smile on my face, and cheerfully gave her a peck on the forehead and a “see you later, we love you”. When she was out of earshot – the floodgates opened. She went into the operating room feeling positive, and that is how she came out. The days to come were challenging, but she at least started recovery on a positive note. Panic will do no good.
3. Get into a routine at the hospital – just like when they were babies! Wise Moms told me – make a spreadsheet of the medicine schedule, keep track, and stay on top of the staff. Even the best hospitals rely on the parents to be present and aware and helpful. I kept track of everything from urine output, fluid input, meds, what she ate, etc. It’s all helpful. My hospital room had a white board for the purpose of communication. When you are sleep deprived and foggy-headed, write down every question and all data to help interact with the staff. Also, our daughter had a tough time staying awake long enough to do the necessary eating, drinking, and movement. So, we put her on her infant schedule of sleep, wake, eat, movement, then sleep. We knew that 30 minutes after she took a Valium, she would be out cold, so we had to push her immediately upon waking up to take advantage of our short window. Not all patients are as sleepy as ours was, but if yours is sleepy, you have to make the most of every waking moment. There wasn’t a lot of time for her to watch tv, etc, when awake in the hospital – that came later. In the hospital, be ready to work. It is not vacation.
4. Try to have another adult there so you can take some breaks. My husband and I both stayed at the hospital in her room. The hospital also had an exercise room and a nice cafeteria. So, twice a day we would each take a turn walking the long length of the hospital and getting food, taking our precious time to chew, etc. If people came to visit, I would have them go with me so I didn’t have to eat alone every meal. We would also each take an hour to go to the workout room during the day, so we could unwind and keep our health up. It really helped us both. On the same note, try to eat as healthy as possible. It’s hard with all the stress, but try. You need to stay healthy for your child.
5. Have a lot of pillows for the ride home – car rides can be bumpy and painful. Create a padded nest. We have a small car, so we put her in the front seat, reclined it as far as it would go, and padded around her. Also, we knew she would sleep 30 minutes after a Valium, so we gave her one 30 minutes before we left. She slept right through the entire car ride!
6. Never underestimate the power of going home. You may think she/he is not ready to leave, but the instant they walk through the doors of home, they start doing a lot better, a lot faster – and so do you. Stick to the meds schedule at home, even at night, or the pain will get too far ahead of you. But, the recovery is very fast when leaving the hospital and getting back to familiar comfortable territory.
7. Get everyone you know praying, but refer back to #1.