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A couple of years ago my son, Ian, fell and fractured his hip. It happened when he was on the freshman football team – at an away game while he was running towards the field with his team mates. Not realizing where the grass turned to concrete, he fell. Hard. Ian’s feet went out from under him and the coach said Ian flew up into the air about three feet and landed directly on his hip. Ouch.

His high pain tolerance (“Mom, it hurts!”), the trip to the emergency room, and his first surgery are for another story. This story is about how Ian successfully went through his second surgery – having the metal pins and rods removed from his hip. It was not an easy task, especially for someone with Fragile X. It required a lot of planning – the hardwarebut the planning paid off because the surgery was successful and Ian is now in much better physical shape because of it.

We decided on the second surgery because over the past two years Ian started  to experience pain from the hardware in his hip. He also developed a funny gait, so we decided to have all the metal removed, which included removal of a four-inch pin in his hip and a seven-inch rod and a two-inch screw in his femur.

For anyone who has a child with Fragile X, I do not have to explain how challenging it can be to prepare your son or daughter for surgery. Since Ian’s surgery was a success, I wanted to share my experience with you, so you can replicate and adopt these steps if you’re ever in a similar situation with your child.

Initial Visit to the Doctor

Ian’s surgery occurred last August. I scheduled the initial appointment with the surgeon the January before. During the appointment, the surgeon took X-rays (Ian wore shorts with sweatpants over them – it was cold outside) to see if the metal had moved since the last time we visited, which it hand’t. The surgeon said he could do the surgery, though he was not very excited about it. He said it’s much easier to put the metal in than it is to take out. The surgeon even said he may not be able to get it out. He thought the recovery would look something like this: One to two days in the hospital, a fair amount of pain, completely non-weight bearing for four to six weeks (which for Ian means a wheelchair), and then extensive physical therapy.

Even with the lengthy recovery process, my husband and I still believed it was in Ian’s best interest to have the surgery. We chose to have the operation during nice weather (no fun pushing a wheelchair in the snow) when Ian had the fewest activities. We also took our schedules into account – we would need time off work for the surgery and we would have to be somewhat flexible about caring for someone who is non-weight bearing. We knew that everything would take more time. And I mean, Everything.

I should add, the original accident took place in a different city from where we live, and the first surgery was done by a surgeon associated with that hospital. My first question after we decided to go ahead with the surgery: Can it be done in the city where we live and by a different surgeon? The answer, yes. (The moral: It never hurts to ask questions, especially when it is in your child’s best interests.)

We chose a hospital near our house and arranged for the surgery to take place first thing in the morning.

Ahead of TimeIan preparing for surgery

  • During the year leading up to the surgery, we told Ian he was going to have an operation in order to have the metal removed from his hip. At first, we told him it would not be for a long time. We found that using the words “not for a long time” worked for Ian. As time passed and we got closer to the surgery, we began to slowly increase the number of times we mentioned it.
  • Each child’s anxiety level is different. We wanted Ian to get used to the idea of having the surgery but we didn’t want it to overwhelm him. For example: There is an evening family bike ride put on by our city in August every year. Ian likes to participate in the ride, so we put the bike ride on the calendar and started saying , “Oh, your surgery is not until after the bike ride.”
  • About a month before the surgery, I talked to Ian’s boss at work. I was not interested in short-term disability for Ian – I just wanted the boss to hold Ian’s job until Ian could return to work. The boss said it would not be a problem. I had to fill out paperwork and keep Ian’s boss informed of Ian’s recovery progress. I also asked the people at Ian’s work not to say anything to Ian about the surgery.
  • About two weeks before the surgery, I started saying, “The surgery is not for a long time, but it is coming up pretty soon.” (Don’t ask me why, but it worked for Ian.)
  • Ten days before the surgery, we had our pre-surgery appointments – at the doctor’s office and at the hospital. When I had scheduled the pre-surgery appointment at the doctor’s office, I told them that we would not be able to start an IV before Ian went into surgery. They told me to be sure to tell the medical team at the pre-surgery appointment at the hospital. I did all this on the phone so I would not have to say it in front of Ian at the appointment.

However, when we went to the hospital appointment, I ended up having to tell the nurse (in front of Ian) that the medical team would not be able to start an IV on Ian before he went into surgery. She said, “Well, we have to.” And I said, “No, you don’t. I have done this before.” She said, “Well, you will have to talk to an anesthesiologist.” I said, “Fine.”

Now, I had not prepared myself for this level of interaction at the appointment and Ian was sitting listening to all of it. As you can imagine, he didn’t miss a thing.

The anesthesiologist came in and I told him the medical team would not be able to start an IV for Ian prior to surgery. He wanted to know what had been done in the past. I told him that during prior surgeries the nurse had given Ian an oral medicine to relax him, either at home or when he first arrived at the hospital. I also explained that I was permitted to put on a gown and accompany Ian into the operating room.

I told the anesthesiologist that I would also like blood drawn, because the only way for us to do blood work on Ian is when he is under anesthesia. He suggested I have Ian’s primary care doctor fax a script over to the pre-surgery testing area so it could be incorporated into his file.

Finally, the anesthesiologist arranged for me to stay overnight in Ian’s room at the hospital so Ian would not wake up alone in a strange place.

On the way home from these appointments, I told Ian that I had talked to all these people so that when he went into surgery he would not have any needles. He said, “No needles?” I said, “No needles.”

Additional Pre-Surgery Steps

  • We arranged to have the wheelchair, a walker, and a bedside commode delivered on the day of his surgery. (So he would not see it ahead of time.)
  • I called Ian’s primary care doctor and asked him to write the prescription for the medication to relax Ian prior to the surgery. I also made sure he faxed the script for pre-surgery blood work, so we could ensure it was accomplished.
  • I called pre-surgery testing two days later to verify that they had received the script for the blood work.
  • Two days before the surgery, I told Ian it would be his last day of work for a long time. I did not mention the surgery. He knew it was coming up – I could tell.
  • On the day before the surgery, I started talking to Ian about the surgery. For example: We are going to get up very early in the morning and go to the hospital. There will be no needles. You are going to stay for one night in the hospital and I will stay with you.
  • I told him he could bring some of his favorite things with him to the hospital. Ian was starting to get anxious, but we planned activities at his local recreation center during the afternoon before the surgery and we had Noodles and Company– one of his favorite foods – for dinner.

Surgery Day

When we woke Ian up in the morning, we gave him a pill to help him relax and drove to the hospital. We brought his favorite pillow and a University of Colorado jersey because the first big football game of the season was that weekend.

Ian in a wheel chairWhen Ian went into the pre-surgery room, I stayed behind and verified that the medical team was not going to attempt to insert Ian’s IV before surgery. I also reminded the team of the blood work that needed to be done. (I am glad I reminded them, because they had skipped right over the order, even though it was in his chart.)

The anesthesiologist stopped by for a quick discussion. We talked about the medications that Ian takes and what medications Ian took that morning. I also added, “A little bit goes a long way with Ian, even with how big he is.” (Ian is 6′ tall and 190 pounds.) The anesthesiologist looked at me, paused, and said, “Thanks for telling me.”

The nurse asked to speak with me about 15 minutes before Ian was supposed to go into surgery. She told me the hospital was short on nurses and that I would not be able to go into the operating room (OR) with Ian. She told me they had it all under control and that it was going to be okay. She said I could walk with him to the doors of the OR.

When they took Ian to the OR, I walked behind the bed. We passed people in the corridor and they said things like, “Hey, are you Ian? Give me a high five!” , “Hey, Ian, you are a rock star!” As Ian went past the doors into the OR, the chief anesthesiologist put his arm around me and said, “Everyone knows what’s going on, we are going to take extra special care of him and he is going to be okay.”

The OR nurse called me twice from the operating room to let me know that he went to sleep just fine and then to tell me they had been able to get all the metal out of his hip. She said the recovery room nurse would come get me as soon as Ian was stable.

When I went into recovery, there was a set of new scrubs lying on the side of Ian’s bed. At some point he had talked someone out of a pair of hospital-issued scrubs – that’s my boy.

Ian can have a hard time waking up from anesthesia, and this time was no exception. With lots of reassurances, he was fine within an hour.

Ian returning homeHe was moved up to a room and spent most of the day sleeping. As we were getting ready to go to bed, the nurse mentioned that someone would be in around 4 a.m. to draw blood. I looked at her and said, “That is not going to happen.” She said she thought the doctor would order it. I said again, “It’s not going to happen.” It didn’t. That night, I slept on a sofa in his room. It was a restless night, but we made it through without any difficulties related to the surgery.

Coming Home

Ian came home the day after surgery. We had set up a bed in the living room so Ian would not have to go up or down steps during the day.

His recovery will be covered in another article, but that first night back home I realized two things: One, I was thankful all the metal was out of Ian’s hip. And two, I was so appreciative I had the time and energy to spend preparing Ian for this surgery. I don’t think it could have gone more smoothly. Sigh.

Author

Jayne Dixon WeberJayne Dixon Weber
has been a member of the NFXF team since 2007 and currently serves as the director of support services. She has two children—one, an adult son with Fragile X syndrome, the other, a daughter who is an occupational therapist. In addition to assisting with the development of the NFXF’s Adolescent and Adult Project, Jayne authored the book Transitioning ‘Special’ Children into Elementary School and is the editor for the book Children with Fragile X Syndrome: A Parents’ Guide. She is also the co-leader of the Colorado Fragile X CSN group. Jayne likes to read, enjoys photography, and goes for a walk every day.