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Welcome to the parent perspective on spinal fusion surgery. I hope this information will be of help to you!

Be prepared - the surgery and recovery will probably be the hardest thing you ever go through with your child! The outcome will be worth it, but the process is intense! I had gone through Jennifer’s appendix rupturing when she was 13 years old and that was pretty bad, so I thought surely this could not be any worse. Boy, was I wrong!

First and foremost, your child must have a family member with her at all times to speak up for her. Arrange to have someone from home stay with your child at night and you stay with her during the day or vice versa. If this is just not possible, ask your child when she wants you there -- what are the most difficult times for her to be alone, or which nurses seem the hardest for her to deal with, and be sure to stay at the hospital during those times. You know your child better than anyone and you have to speak up for her when she says she cannot do any more at that moment, in spite of what hospital staff may be pushing her to do. You and she know her limits better than anyone else. There will always be another opportunity to take a walk, use the inspirometer, etc.

If the hospital is not close to your house, check into a hotel or motel near the hospital. It will be worth every penny not to have to drive an hour or more each way each day to be with your child. You will be tired enough without adding a commute to this whole process!

Speak up about pain medicine and all medicine given to your child. Use a tablet or notepad to keep your own records of when every dose of every medicine is given. Record every walk, every use of the inspirometer, every comment your child makes about the care she is receiving, and the care you see her receiving. Keep track of the names of the outstanding nurses (both good and bad). This way you can give positive feedback to the hospital about their “angels” and keep a very close eye on the “below average” nurses. 99% of all nurses are great, but you do have to speak up about that 1% for the sake of your child. While we had very good experiences with the nurses this time, we had a horrible experience with one nurse during the ruptured appendix event. She was clearly incompetent and because I had documented everything then, too, I was able to back up my demand to the nursing supervisor that that woman never be allowed near my daughter again! The hospital honored my demand. Now back to this surgery - ask about all the medicines that have been prescribed and the reasons for them. At first, we did not know a sleeping pill had been prescribed for Jennifer if she needed it, nor did we know about Benadryl (an antihistamine) to take care of a possible side effect of itchiness that one of her medications could have given her. (Thank goodness it didn’t!)

Visitors, however well intentioned, will exhaust your child and this will make her pain worse. Do not allow any visitors while she is in the hospital! It just is not worth it! Visitors are okay once you are home, but even then set a time limit of one to two hours maximum each day.

In the beginning, your child will be very weak and will need your help with absolutely everything (getting in and out of bed, eating, brushing teeth and hair, even wiping away her own tears). This loss of independence is very hard on everyone, but keep remembering that this too shall pass. Every day will be a little better, even though it may not seem like it. Look for the little improvements and be happy with them!

Here are some little things we found very helpful to have and/or do while you are both in the hospital. Keep a tub of ice water and a washcloth handy. Wiping down your child’s face, neck, and arms when when she is uncomfortable is very soothing. Bring some good books to read! You will need them while the surgery is going on, and during all the times your child will be sleeping. Have the name and phone number of one person to call with progress reports, and have that person call everyone else with this information. This will save you a lot of time!

Remember to take care of yourself during this time: eat well and regularly; get some sleep; take your vitamins; ask/let others help you -- have them sit with your child while you take a break for a while; just be there and listen when you need to talk, etc.

One thing to realize is that the curve may increase slightly for the first few months after surgery, before the fusion has thoroughly taken hold. Jennifer's curve grew four degrees by the six-month check-up. The surgeon said this was not a problem, but it was a shock for which I was unprepared.

Even though you may not believe me right now, you will get through this! Everything will turn out well, and you will reach the point when you know it was the best decision for your child and you are glad you did it. Honest!

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