This is part 2 of a two part story. Read part 1 here.
My husband and I have two girls with BPES. Our oldest, Amelia, had her first eye surgery (canthoplasty) when she was three and her second surgery (external levator resection) when she was four. This procedure was recommended by another mom in one of the BPES groups and when we met our doctor, that was the approach he recommended as well. He said that she had quite a bit of muscle in her forehead that would work well for the sling surgery, but he felt that with her current eyelid opening, external levator resection was the best way to go.
Leading up to this surgery was different in various ways as it was not her first surgery and we did not have concerns with how she handled anesthesia, etc. She also was aware she was having surgery and talked about it frequently before the day of the surgery.
Although, there are advantages of already experiencing surgery with your child, there are also disadvantages. We knew how hard it would be when we had to part ways with Amelia prior to surgery. We also knew how tough the recovery room would be, and these thoughts led to anxiety for us as parents. We talked to Amelia and offered her many options to ask questions or raise any concerns she may have had. She didn’t have any questions; she knew the doctor was going to paint her eyes to help her see better.
This surgery was, thankfully, scheduled first thing in the morning. She didn’t have nearly as much time playing in the playroom like before as we didn’t have any delays; she wasn’t happy about this. When we went back with the nurse to get her changed and ready for surgery, she started to get nervous because she remembered this part. Her surgeon came in and she reminded him he would paint her eyes. When he marked her eyes for surgery he drew a tulip above one eye and a daisy above the other and showed her it in a mirror; she was pleased.
She made sure to tell the anesthesiologist that she threw up at her last surgery and did not want to throw up again. He told her he would do his best to make sure she did not get sick. When it was time to part ways with her; she cried and was very upset. This was very hard for us, but we knew it was necessary.
This surgery took a little less than an hour and everything went well. We were in the recovery room with her within ten minutes of her arriving. This recovery room experience was much harder than the one we had the previous year. The fact that she was a year older made it much more difficult as she was more aware of what was going on. When we walked into the recovery room we could hear her yelling. I sat in the bed with her and held her as she was waking up.
She continually complained that her “watch” was hurting her hand and wanted it taken off. Her IV was in her hand and it was causing her discomfort. After this going on for approximately ten minutes, her nurse asked if we thought the IV was causing more discomfort than her eyes, we agreed that it was and asked that it be removed. They were attempting to leave the IV in place in case she needed more pain medicine. The surgeon had already prescribed an oral pain medicine she could also take so we decided to take the IV out to limit her aggravation. She was much more combative this time when she was waking from anesthesia, which can be attributed to the fact that she was a year older. Once the IV was removed and they gave her a dose of pain medicine, we were able to go home.
When we came home, Amelia said she couldn’t open her eyes. I’m pretty sure her eyes felt different to her and she was afraid it may hurt when she opened them. Once she was settled at home with her daddy, I went to pick up her pain medicine from the pharmacy. While I was there, I went to the toy section to see if I could find something she could enjoy with her eyes closed. I found a container of FLARP, which is a noise putty that makes silly noises when you put your hands in it. I thought even if she won’t open her eyes, she can feel the cool, gooey, texture and hear the funny sounds. Within a minute of giving it to her she opened her eyes and had a great time with her new toy. After this, she was pretty close to being back to her normal self. I had her sleep in my bed the night of surgery, just so I could make sure she was ok.
The recovery period from external levator resection surgery was even less than the recovery from the canthoplasty surgery she had a year prior. She has healed wonderfully and we are all very happy with her results.
We are now preparing for our youngest daughter, Eleanor’s surgery in summer 2017. It will not be easy preparing for Eleanor’s first surgery as we will still have all the fear and anxiety leading up to the surgery date, but, at least, we know what to expect in the healing process.
Children are incredibly resilient and will amaze you with their strength. As a parent, I would recommend making sure you communicate what is going to happen at a level your child can understand and allow them the opportunity to ask questions. Attempt to make this experience as normal as you can for your child. Amelia understood what was going to occur on her level and it really helped with both of her surgeries.
If you are reading this, most likely, you either have a child that may need surgery or has already had surgery. I know the emotions can be really overwhelming, as they have been for us. In the end you have to make the best decision for your child and hold it together long enough to get through it. They will pick up on your anxiety and it could cause unnecessary stress for them. If they see mommy, daddy, or anyone else close to them crying, upset, etc. about the surgery, they will also be concerned. My greatest piece of advice is to keep the whole idea of surgery as normal as possible and explain things on their level. Hugs and love to all the moms and dads either considering or preparing for surgery.
Read Part 1 of this post about Amelia's first surgery here.
Written by Cyndy Somerset, whose husband and two children have BPES.
My husband and I have two girls with BPES. Our oldest, Amelia, had her first eye surgery (canthoplasty) when she was three and her second surgery (external levator resection) when she was four. This procedure was recommended by another mom in one of the BPES groups and when we met our doctor, that was the approach he recommended as well. He said that she had quite a bit of muscle in her forehead that would work well for the sling surgery, but he felt that with her current eyelid opening, external levator resection was the best way to go.
Leading up to this surgery was different in various ways as it was not her first surgery and we did not have concerns with how she handled anesthesia, etc. She also was aware she was having surgery and talked about it frequently before the day of the surgery.
Although, there are advantages of already experiencing surgery with your child, there are also disadvantages. We knew how hard it would be when we had to part ways with Amelia prior to surgery. We also knew how tough the recovery room would be, and these thoughts led to anxiety for us as parents. We talked to Amelia and offered her many options to ask questions or raise any concerns she may have had. She didn’t have any questions; she knew the doctor was going to paint her eyes to help her see better.
This surgery was, thankfully, scheduled first thing in the morning. She didn’t have nearly as much time playing in the playroom like before as we didn’t have any delays; she wasn’t happy about this. When we went back with the nurse to get her changed and ready for surgery, she started to get nervous because she remembered this part. Her surgeon came in and she reminded him he would paint her eyes. When he marked her eyes for surgery he drew a tulip above one eye and a daisy above the other and showed her it in a mirror; she was pleased.
She made sure to tell the anesthesiologist that she threw up at her last surgery and did not want to throw up again. He told her he would do his best to make sure she did not get sick. When it was time to part ways with her; she cried and was very upset. This was very hard for us, but we knew it was necessary.
This surgery took a little less than an hour and everything went well. We were in the recovery room with her within ten minutes of her arriving. This recovery room experience was much harder than the one we had the previous year. The fact that she was a year older made it much more difficult as she was more aware of what was going on. When we walked into the recovery room we could hear her yelling. I sat in the bed with her and held her as she was waking up.
She continually complained that her “watch” was hurting her hand and wanted it taken off. Her IV was in her hand and it was causing her discomfort. After this going on for approximately ten minutes, her nurse asked if we thought the IV was causing more discomfort than her eyes, we agreed that it was and asked that it be removed. They were attempting to leave the IV in place in case she needed more pain medicine. The surgeon had already prescribed an oral pain medicine she could also take so we decided to take the IV out to limit her aggravation. She was much more combative this time when she was waking from anesthesia, which can be attributed to the fact that she was a year older. Once the IV was removed and they gave her a dose of pain medicine, we were able to go home.
When we came home, Amelia said she couldn’t open her eyes. I’m pretty sure her eyes felt different to her and she was afraid it may hurt when she opened them. Once she was settled at home with her daddy, I went to pick up her pain medicine from the pharmacy. While I was there, I went to the toy section to see if I could find something she could enjoy with her eyes closed. I found a container of FLARP, which is a noise putty that makes silly noises when you put your hands in it. I thought even if she won’t open her eyes, she can feel the cool, gooey, texture and hear the funny sounds. Within a minute of giving it to her she opened her eyes and had a great time with her new toy. After this, she was pretty close to being back to her normal self. I had her sleep in my bed the night of surgery, just so I could make sure she was ok.
The recovery period from external levator resection surgery was even less than the recovery from the canthoplasty surgery she had a year prior. She has healed wonderfully and we are all very happy with her results.
We are now preparing for our youngest daughter, Eleanor’s surgery in summer 2017. It will not be easy preparing for Eleanor’s first surgery as we will still have all the fear and anxiety leading up to the surgery date, but, at least, we know what to expect in the healing process.
Children are incredibly resilient and will amaze you with their strength. As a parent, I would recommend making sure you communicate what is going to happen at a level your child can understand and allow them the opportunity to ask questions. Attempt to make this experience as normal as you can for your child. Amelia understood what was going to occur on her level and it really helped with both of her surgeries.
If you are reading this, most likely, you either have a child that may need surgery or has already had surgery. I know the emotions can be really overwhelming, as they have been for us. In the end you have to make the best decision for your child and hold it together long enough to get through it. They will pick up on your anxiety and it could cause unnecessary stress for them. If they see mommy, daddy, or anyone else close to them crying, upset, etc. about the surgery, they will also be concerned. My greatest piece of advice is to keep the whole idea of surgery as normal as possible and explain things on their level. Hugs and love to all the moms and dads either considering or preparing for surgery.
Read Part 1 of this post about Amelia's first surgery here.
Written by Cyndy Somerset, whose husband and two children have BPES.
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