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Alyssa was born with a left clubfoot. She was casted at the age of 3 days old. We tried casting and braces but nothing seemed to work. We then turned to surgery and tendon lengthening. She did two of these (between the age of 2 and 3) and at the age of 4 we tried one more time to do a tendon lengthening and also her leg was much shorter so we opted to try to give her some length with a metal rod in her leg. The surgery went great, the doctor was happy with the outcome. We were released to go home and then our worst nightmare started and did not end for over 6 months.
When we got home Alyssa started complaining she needed to use the restroom, over and over, and over. As you can imagine, this can take a toll on us as her parents because we had to carry her back and forth to the restroom. When she got to the restroom, she did not have to go. This continued for a little over 12 hours, at about the 12 hour mark, she spiked a fever. We rushed her to our local children’s hospital and they decided she was having an allergic reaction to the anesthesia but before they released us, they wanted to open her cast to make sure the surgery wound was ok. As her parents, we begged them not to do that. We would see her surgeon on Monday and would like the surgeon to do that because Alyssa had some pins in her foot, and we did not want them to accidently pull them. But they insisted so we agreed. The wounds were fine and they put an ace bandage on her and sent us home.
On Monday, we had a follow up visit with the surgeon and that is when we saw the wound again, except this time it was not good. It was infected. The doctor sent a swab of the infection for lab testing and we found out it was a bacterial infection and was only going to get worse. And it did. The infection set in to her foot and began to eat away at her cartilage and even the bone in her toes. One of her toes even turned black. We took all of our focus on saving her foot. We inserted a wound vac which meant Alyssa would be in outpatient surgery three days a week to clean the wound and change the wound vac. The wound vac saved her foot. The infection was going away. We were able to get a home healthcare nurse to come and change her dressing in her foot (the wound was about 2" deep and it was packed with gauze). This went on for over 4 months. Not only were we trying to save her foot, her life, but we were having to hire lawyers to help with the insurance company because they were refusing to pay for the wound vac at over $1,000 per day because they felt that it was not necessary for a 4 year old, but for a 5 year old it was. This is a story for another time.
About a year ago, Alyssa is 8 at this time, we went to a routine 6 month appointment with our pediatric orthopedic surgeon and she spoke the words we never thought we would hear, below the knee amputation. What!? We fought so hard to save her foot? Why? But the cold hard truth was that Alyssa's leg and foot were not growing. The infection "ate" so much of the bone and cartilage and her foot would forever stay a toddler size 12. If we leave it, she will be in a wheelchair in possibly 2-3 years. We knew that we had to do something. Alyssa was having a lot of problems with her ankles, her knees, and her hips were hurting a lot. But amputation was not what we thought.
We sat on it for a year, but over this time, Alyssa continued to decline physically. She could not walk for long periods of time, her ankles would swell and her left foot was getting covered in calluses. We knew early summer 2016 we would need to make a decision. So we started doing some research, prayed, seeing doctors, doing more research, praying some more, seeing and speaking with more doctors. In July 2016, we meet with an orthopedic surgeon that specializes in amputations. He told us our options, and we decided that the best option for Alyssa is a below the knee amputation. For 2 months, we spoke about it privately. We weighed the pros and cons, we meet with more doctors including the prosthetic doctor that will make her new leg, and even physical therapist and therapists.
Last week, we decided it was time. We have 100% been honest with Alyssa and have not sugar coated anything with her. As a matter of fact, when we told her about a year ago she said, “What are they going to do with my leg? Can I keep it for a Halloween decorations?” There are no words to describe her ability to keep us, her parents, calm. She has this way of reassuring us that we are making the right decision without telling us. To say she is not scared would be a lie. She is scared, she is scared of the unknown but she is ready to move on from this awful experience, and do things that she has not been able to do (play soccer, get on a horse on her own). She inspires us. Her ability to walk her walk without complaining, or feeling sorry for herself is truly amazing. Her below the knee amputation has been scheduled for December 8, 2016.
The money that we raise will help to cover her medical expenses over what our insurance will cover. The expenses will include her physical and mental therapy, her medical equipment that will be needed (wheelchair, crutches, or scooters), and her new leg. Alyssa will have a long recovery that will require many doctor check ups, etc. We will also need to hire a tutor to keep her from getting to far behind in school. Because of the infection, we already have had to hold her back one grade and we want to try our best not to do that again. Thanks you for reading her story.
When we got home Alyssa started complaining she needed to use the restroom, over and over, and over. As you can imagine, this can take a toll on us as her parents because we had to carry her back and forth to the restroom. When she got to the restroom, she did not have to go. This continued for a little over 12 hours, at about the 12 hour mark, she spiked a fever. We rushed her to our local children’s hospital and they decided she was having an allergic reaction to the anesthesia but before they released us, they wanted to open her cast to make sure the surgery wound was ok. As her parents, we begged them not to do that. We would see her surgeon on Monday and would like the surgeon to do that because Alyssa had some pins in her foot, and we did not want them to accidently pull them. But they insisted so we agreed. The wounds were fine and they put an ace bandage on her and sent us home.
On Monday, we had a follow up visit with the surgeon and that is when we saw the wound again, except this time it was not good. It was infected. The doctor sent a swab of the infection for lab testing and we found out it was a bacterial infection and was only going to get worse. And it did. The infection set in to her foot and began to eat away at her cartilage and even the bone in her toes. One of her toes even turned black. We took all of our focus on saving her foot. We inserted a wound vac which meant Alyssa would be in outpatient surgery three days a week to clean the wound and change the wound vac. The wound vac saved her foot. The infection was going away. We were able to get a home healthcare nurse to come and change her dressing in her foot (the wound was about 2" deep and it was packed with gauze). This went on for over 4 months. Not only were we trying to save her foot, her life, but we were having to hire lawyers to help with the insurance company because they were refusing to pay for the wound vac at over $1,000 per day because they felt that it was not necessary for a 4 year old, but for a 5 year old it was. This is a story for another time.
About a year ago, Alyssa is 8 at this time, we went to a routine 6 month appointment with our pediatric orthopedic surgeon and she spoke the words we never thought we would hear, below the knee amputation. What!? We fought so hard to save her foot? Why? But the cold hard truth was that Alyssa's leg and foot were not growing. The infection "ate" so much of the bone and cartilage and her foot would forever stay a toddler size 12. If we leave it, she will be in a wheelchair in possibly 2-3 years. We knew that we had to do something. Alyssa was having a lot of problems with her ankles, her knees, and her hips were hurting a lot. But amputation was not what we thought.
We sat on it for a year, but over this time, Alyssa continued to decline physically. She could not walk for long periods of time, her ankles would swell and her left foot was getting covered in calluses. We knew early summer 2016 we would need to make a decision. So we started doing some research, prayed, seeing doctors, doing more research, praying some more, seeing and speaking with more doctors. In July 2016, we meet with an orthopedic surgeon that specializes in amputations. He told us our options, and we decided that the best option for Alyssa is a below the knee amputation. For 2 months, we spoke about it privately. We weighed the pros and cons, we meet with more doctors including the prosthetic doctor that will make her new leg, and even physical therapist and therapists.
Last week, we decided it was time. We have 100% been honest with Alyssa and have not sugar coated anything with her. As a matter of fact, when we told her about a year ago she said, “What are they going to do with my leg? Can I keep it for a Halloween decorations?” There are no words to describe her ability to keep us, her parents, calm. She has this way of reassuring us that we are making the right decision without telling us. To say she is not scared would be a lie. She is scared, she is scared of the unknown but she is ready to move on from this awful experience, and do things that she has not been able to do (play soccer, get on a horse on her own). She inspires us. Her ability to walk her walk without complaining, or feeling sorry for herself is truly amazing. Her below the knee amputation has been scheduled for December 8, 2016.
The money that we raise will help to cover her medical expenses over what our insurance will cover. The expenses will include her physical and mental therapy, her medical equipment that will be needed (wheelchair, crutches, or scooters), and her new leg. Alyssa will have a long recovery that will require many doctor check ups, etc. We will also need to hire a tutor to keep her from getting to far behind in school. Because of the infection, we already have had to hold her back one grade and we want to try our best not to do that again. Thanks you for reading her story.