Kaydee's Final Spinal Surgery
Donation protected
Hello, for those of you that don't know me and our daughter, I am Cynthia, and I am trying to raise money for our daughter Kaydee. Kaydee is 10 yrs old and is our second born of 4 children. Her older brother Lance is 13, her younger brother Riley is 8 and her sister, name undecided as of now, is due to join us on September 25, 2015. My husband is Isaac and like I said, I am Cynthia. I will be honest, asking for money or "hand outs" as some call it, has never been one of my strengths, so coming onto Go Fund Me took a lot of thinking, some asking around and some praying. The thing that ultimately led me to this option was clear. First it started with a friend I went to school with messaging me on Facebook when she heard about Kaydee's latest challenge, she suggested that we start a fund, then it was popping up everywhere. I was seeing it online, on other peoples Facebooks and even friends in other states were sharing with my family that they thought we should start a Go Fund Me for Kaydee. So after seeing ALL the signs that I do believe the good Lord was sending me, I decided, what is the worst thing that could happen? We could raise no money, but we could at least raise some awareness in each person that read Kaydee's story. So that is what brought ME here, now let me share with you what brought our Kaydee here.
Kaydee was born to us on March 12, 2005. She was the most beautiful baby girl we had ever seen, even more beautiful than we could have imagined. Before I go any further, I want to just add this, when I was pregnant with Kaydee, I remember telling the doctor at one of my prenatal visits that I just had a hunch that something was wrong, I didn't know what, I wasn't experiencing any difficulties in the pregnancy or anything like that, it was just an intuition, a motherly hunch I guess you could say. Now back to Kaydee, when Kaydee was just 2 days old, she stopped breathing and turned a bluish color while I was burping her. It was the scariest thing ever, or so I thought in that moment. We rushed her to the ER and from there she rode in an ambulance to the local airport in Blythe, CA (I was born and raised in California and all 3 of our current children were born there as well) where they loaded her onto an airplane and flew her to what was then called the San Diego Children's Hospital. After spending a couple of days there, they sent her home with us and a diagnosis of GERD, or as most know it, reflux, and some prescribed medications. And all was well until she was about 2 1/2 weeks old. She was spitting up profusely, crying a lot and her tummy was so full, yet every time I fed her, she would vomit, projectile vomit that is. So another trip to the ER and it was off in a helicopter this time from Blythe, CA to the Children's Hospital in Loma Linda, CA. Kaydee spent nearly a week in that hospital as they did several tests to try to figure out why she couldn't eat and why her tummy was so big. They never did come up with anything solid, but they did send us home on a fancy, quite expensive pre-digested formula for her to eat. And believe it or not, that did seem to do the trick. We were given instructions at that point that Kaydee was not to be laying on her back flat so they suggested we put her in a carseat to sleep, or a bouncer because they positioned the babies to be more upright. So we did just that.
All was going well for our Kaydee girl, she was growing and thriving and we couldn't be happier. But at around 7 months of age, we noticed that when Kaydee would sit up, she leaned over to one side quite a bit. At first we thought that she just didn't have good trunk control. We didn't think much of it until the next month when we were at my parents house for Thanksgiving. I have a cousin that is a nurse and she was there that evening. So I had her look at Kaydee while she sat, and she thought that we should mention it to her Pediatrician because it definitely looked abnormal to her, so that's what we did. The next week we took her in to see the doctor and the doctor agreed, it was abnormal and referred us to a specialist in San Diego at the Children's Hospital. We were able to make the appointment for the following week, the first week in December. I remember when we were traveling there, see San Diego is about 3 1/2 hours from Blythe, where we were living, and again, I wasn't too terribly worried, but that all was about to change. Kaydee saw Dr. Wenger for her first visit. I remember we did x-rays and then the doctor told us that Kaydee would need MRI so that we could rule out any tumors or growths that could be causing her spine to grow the way it was. The x-rays showed her little spine looking like the letter C. So we had the MRI done and I remember them telling us it would take a few days for the results....talk about the longest wait of our lives. Tumors? Growths? Those were definitely not things that I had thought about, and naturally my mind was all over the place...especially in the bad places. How could this be happening to MY baby girl? I was a mess! I remember the day they called me with the results to the MRI, I was at work, I worked at a Methodist Church at this time, which I thought was a great place to be considering I could get either good news or bad. There were no tumors or growths, her diagnosis was Infantile Idiopathic Scoliosis. What is that you ask? It's Scoliosis, in an infant, of an unknown source. I was wipping my brow over the no tumor/growth news, but I was scratching my head over the scoliosis news. The doctor also told us that he wanted to send us to a different doctor, one that also worked in his department, that speicalized in Scoliosis. His name is Dr. Peter O. Newton. We saw Dr. Newton and after looking at her x-rays, he explained to us that typically in kids this young, remember, Kaydee was only 8 months old when she was diagnosed, observing and monitoring is what they do. So we went back home and scheduled a 3 month follow-up appointment. At Kaydee's first x-ray, the curve in her spine was 33 degrees. At her 3 month follow up, Kaydee is now 12 months old, the curve was 53 degrees. Not good....not good at all. So Dr. Newton suggested that we put Kaydee under anesthesia just like they would when you have surgery, and shove her back over to the opposite direction it was growing in, so as to make it straight, and then apply a fiberglass cast. What this does is basically trick the spine in to growing the other way, so it will straighten things out. I remember the doctor and the nurse that works with the doctor telling us that she would be casted over the shoulders, over the back, down thigh to the top of the knee and over the tummy with an opening left for her to be able to breathe. So we scheduled this casting for the following month. Kaydee was just 13 months old when she had her first procedure done. She didn't know how to walk yet, she couldn't talk much other than a hand full of words, and she was still in diapers. We can handle this I said to my husband, and then they called us to tell us she was waking from the anesthesia. What I saw that day is still hard for me to think about. Nothing that they told us or even that my mind could have imagined could explain what I was looking at. Our poor baby was laying on her back in this huge hard cast that was harder, thicker, and uglier than anything I had ever seen. She cried as she moved her arms and the fiberglass cast scratched her skin, it was one of the saddest things I have ever seen in my life. I was starting to wonder in that moment if we had done the right thing. Looking back now, I know that we did. The instruction for Kaydee was to be in this cast for 6 months. Diaper changing was a joke, I had to stick one diaper over her and tuck it under the cast, then take another diaper, a bigger size, and put that over the diaper I had shoved under the cast. And no bathing in this cast. Have you ever taken care of a 13 month old? It is no walk in the park and baths are a big deal to keep these kiddos clean. This was turning out to be what felt like a sick joke. 6 months? How on earth were we ever going to make it 6 months in this thing? WE? How was SHE? Oh it didn't happen, we lasted 3 months in that cast. And when we took Kaydee back to Dr. Newton after spending three months in that cast, the x-rays showed no improvement. Wow, we were blown away and beside ourselves. How was that even possible? Who knows, but it was. So the doctor removed the cast and told us he wanted to do more monitoring/observing. And we went home. 3 months later we went for a follow-up, and this is where things went from bad to worse. It was October 2006, Kaydee was now 17 months old and the x-rays were worse than before. Kaydee now had an 88 degree curve in her spine, her spine looked like the letter S, and the doctor was worried becasue he felt that any more observing/monitoring would just result in more curvature which would then result in Kaydees heart and lungs getting squished/compromised. So he told us that Kaydee would have to have surgery. He would insert 2 titanium rods into Kaydee's back that would anchor onto the top and bottom portions of her spine. These rods would be adjustable so that they could be lengthened every 6 months to grow with Kaydee. So we were just hit with the news that our only daughter would have to have surgery, and that these surgeries would now have to take place every 6 months. Until when we asked? Until she reaches puberty or had done the majority of her growing, OR until her body won't allow us to do any more surgeries. Some people had asked me if that was hard to swallow, hearing that news. Hard to swallow, I nearly choked. The only other option was to do nothing, and that could kill Kaydee if her heart and lungs were squished, I could never do that. So it was surgery. Kaydee had her first surgery in November of 2006. And she had surgery every 6 months after that until July of 2014. Some times we did surgery at 5 months and other times we did surgery at 7 months, it all depended on school and holidays and things like that. Oh and I forgot to tell you that we moved away from California to Nebraska in 2008, maybe that will be next.
In August 2008, the economy in California was horrible, I was working 2 part-time jobs and my husband had just lost his job. So on a hope and a prayer, LOTS of prayers, we packed our family up, Lance was 6, Kaydee was 3 and Riley was 1. My husband Isaac was born and raised in Nebraska, so it was moving closer to his family that brought us here. I was all for it, under a few circumstances. And the one major one was that Kaydee and I fly back to San Diego, CA every 6 months for her scoliosis surgeries. So many people, more people than I can count on my hands and feet, have asked us why we don't just pick a doctor in Nebraska instead of traveling half way across the country for these surgeries. Well I will tell you why. Dr. Newton is the most amazing surgeons I have ever met in my life. Now yes, to be honest, I have only met a few surgeons in my life, and none of them have been surgeons for me, because I have never had surgery, but the way that this man has treated our daughter and even us as her parents, is priceless. Kaydee has trusted this man from the very beginning and all of his staff too. We never feel scared to send her off to surgery with Dr. Newton or his fellows. Are scared? Yes, but not because we don't trust the doctor or fear that he could do anything wrong. He is the best of the best and we wouldn't change him as Kaydee's surgeon for ALL the money in the world. She considers him more than just her doctor, she trust him, and so do we. So why do we travel far and wide? Because you can't buy trust like this. You either have it, or you don't. So since 2008, Kaydee and I have traveled back and forth to what is now Rady's Children's Hospital of San Diego, for all of her scoliosis surgeries.
Last July at one of our regular 6 month pre-op appointments Dr. Newton came into the room and shared with us what we thought was the best news we could ever hear. See, a couple of years ago, in San Diego, they had inserted MAGEC Rods into 2 kids. These MAGEC Rods were controlled magnetically. Meaning that these kids didn't have to have surgery every 6 months to lengethen the rods, the magnets did this instead and it didn't require surgery, other than the intital implantation. Well Dr. Newton told us that he would like put the MAGEC Rods into Kaydee......I was speechless, I was speechless and I cried. I cried like a baby. Our baby girl wouldn't have to have surgeries every 6 months any more!!!! I couldn't wait to call my husband back in Nebraska and share the good news! See, because of financial costs and because we have 2 sons as well, it was almost always just Kaydee and I flying out to San Diego for her surgeries, so Isaac wasn't with me when we got this good news. He couldn't believe it, we were both in shock and beyond elated! So that very next day, Kaydee was prepped for surgery and the MAGEC Rods were surgically inserted. After 5 days in the hospital Kaydee was realeased only to be re-admitted that same night due to an allergic reaction. We still to this day do not know what she was allergic to, but it was awful. That put her in the hospital an extra 3 days. And bless her heart, no complaints out of her. Now me on the other hand, I wanted out of that place! Kaydees allergic reaction subsided after lots of creams and medications and it was back to Nebraska we went. Kaydee had her first magnetic lengthening in November 2014. It was one of the coolest things I have seen ever. A huge magnet is put up against a magnetic spot in Kaydees spine and the magnet is connected to a machine/motor that moves these rods magnetically based on the length you tell it to. It literally took less than a minute. LESS THAN A MINUTE!!! Here all these years we had been traveling 1,500 miles one way to have surgeries and pre-op appointments and post-op appointments and all of a sudden we get to show up for a doctors appointment and do a procedure that lasts less than a minute?!?! Are you kidding me?! It felt like a dream. And now as we look back, we see that we got to dream for awhile.....
Just a couple of weeks ago Kaydee and I went back to San Diego for her second magnetic lengthening. We were due to go back in March, but due to my schooling, we had to change the date to April. See, I am currently in Nursing School to become a Licensed Practical Nurse. I know what you must be thinking, she had 3 kids, one on the way, a daughter with scoliosis that requires lots of traveling and expenses, AND she's in school too? And just to add to that, I also work part-time to pay the mortgage. What can I say, I guess I am an over achiever, or one that likes a challenge. Back to Kaydee, so on April 9th (just 11 days ago) Kaydee and I woke up in beautiful San Diego, got ourselves ready and headed to her doctors appointment to have her back magnetically lengthened. We did the usual, x-rays, height, weight and off to the room to wait for the doctor to come in. After 45 mins, we still didnt' think anything was wrong. We just thought that they were busy. So the doctor finally walked in, gave Kaydee a huge hello and a hug and asked how she was feeling. "Fine!", she says in her normal bubbly giddy voice. And the questions continued from there, any pain, any discomfort, does it hurt when I do this, does it hurt when I touch there, and it even took me a minute or so for it to register. Something was wrong. He never asks this many questions, not questions that would indicate a problem, and these questions definitely indicated a problem. So I said, "Somethings wrong isn't it?" and it was then that he gave us the bad news. The x-rays showed that the magnetic rod on the ride side of Kaydees spine was broken. Broken.....now that was a word that we had never hear in all the years that Kaydee has been having these surgeries. Hooks have come unhooked and screws have come loose, but she has never broken any of the hardware. Until now.....like I said, the rod was broken, and it was clear from the picture of the x-ray, it was broken. The doctor also said he thought that the 2 screws on the top left side of her back were loose. And he said that he thinks the reason that the rod on the left side of her spine wasn't broken was because the screws on that side had come loose. I can only imagine the look on my face as he told us this news. There were 2 doctors from over seas in the room too, this hospital is a teaching hospital, so often there are doctors from across the world following Dr. Newton. I don't think I noticed them until they were all leaving the room. And thank goodness for the nurse in the room, she handed Kaydee and I a box of tissue. Kaydee began to cry when she heard Dr. Newton tell me that the rod was broken.....and when she cried, I cried. I couldn't understand how this could happen, and luckily the doctor explained to Kaydee, it was nothing that she did. It was just one of those things that could happen. After getting my composure, which took me God knows how long, he began to tell us what our options were. Basically we had 2 options. One option was to do surgery and attempt to fix the broken rod and re-enforce 2 new screws, but this option wasn't a for sure deal. The rod could break again and the screws could possibly remain loose. Then there was Option 2, we could do Kaydees final surgery, where they would fuse her spine and it wouldn't grow any longer for the rest of her life. We have known from the very first time they diagnosed Kaydee that we would have to fuse her spine, but we thought she would be about 12 years old. She is 10 now, what's 2 more years you ask? Well Kaydee is only 4 foot 2 inches tall right now, so unless her legs do a LOT of growing, she is going to be rather short. As her mother, I worry not about Kaydee, but about the world we live in. Will the kids make fun of her if she is shorter than them all? Will her body be out of porportion? Will she be able to have children? My heart hurts just thinking of all the unknowns. Can Kaydee handle this? Oh gosh, that isn't a question in my mind, ABSOLUTELY! In all the years, 9 to be exact, and all the surgeries, I stopped counting at 15 surgeries, there is one thing that has remained consistant, Kaydees strength and courage. She doesn't complain, she doesn't throw any fits, she even looks forward to staying over night in the hospital because she says their breakfast is the best, especially their scrambled eggs! My eggs must be terrible is what you're thinking huh? LOL, I tell you, this child of mine has given me more hope, strength, courage, love and inspiration than any other person in this world. I thank God every day for giving us and entrusting in us one of his angels, and that is exactly what she is, she is our angel.
So which option did we pick? We chose the second option, the final fusion surgery. Which to be honest, wasn't the hardest part of all of this. The hardest part of all of this is the time frame we have been given. The doctor didn't want us to fly back home, he wanted us to stay in San Diego and have the surgery in the next couple of weeks, but I begged for time. And he gave it to us, but he only gave us 4 weeks. I had to get back to Nebraska to see my husband and our boys and to surround myself with support. Not only that, I had to get back to work and school so that I could try and squeeze all of this in my schedule without losing anything, my job or my place in nursing school, after all, both are vital parts of our survival now and for our future. So Kaydee and I flew home on Monday, April 13th and we scheduled her surgery for May 6th. Now this is where all of you come in. Not only do I not have much in the books for Paid Time Off, I think I may have 28 hours of combined Sick & PTO, but we just got back from California. It takes us months to save up for these trips. We don't have months this time, we literally have weeks, her surgery is in 16 days. Between plane tickets, gas money, and money for food, we could sure use some help financially. I have no expectations for this fund, like I said before, if the only thing that I, myself, get out of this fund is to raise awareness, then I will be able to rest my head soundly at night. But I am not here for myself, I am here for our daughter, I am here for Kaydee. Anything that you can give will be appreciated, even if it is just your time in reading her story or kind words of encouragement, a prayer, or even sharing your story with us.
Thank you and Blessings to you all,
The Auld Family
Isaac, Cynthia, Lance, Kaydee, Riley and baby girl due in September!
Kaydee was born to us on March 12, 2005. She was the most beautiful baby girl we had ever seen, even more beautiful than we could have imagined. Before I go any further, I want to just add this, when I was pregnant with Kaydee, I remember telling the doctor at one of my prenatal visits that I just had a hunch that something was wrong, I didn't know what, I wasn't experiencing any difficulties in the pregnancy or anything like that, it was just an intuition, a motherly hunch I guess you could say. Now back to Kaydee, when Kaydee was just 2 days old, she stopped breathing and turned a bluish color while I was burping her. It was the scariest thing ever, or so I thought in that moment. We rushed her to the ER and from there she rode in an ambulance to the local airport in Blythe, CA (I was born and raised in California and all 3 of our current children were born there as well) where they loaded her onto an airplane and flew her to what was then called the San Diego Children's Hospital. After spending a couple of days there, they sent her home with us and a diagnosis of GERD, or as most know it, reflux, and some prescribed medications. And all was well until she was about 2 1/2 weeks old. She was spitting up profusely, crying a lot and her tummy was so full, yet every time I fed her, she would vomit, projectile vomit that is. So another trip to the ER and it was off in a helicopter this time from Blythe, CA to the Children's Hospital in Loma Linda, CA. Kaydee spent nearly a week in that hospital as they did several tests to try to figure out why she couldn't eat and why her tummy was so big. They never did come up with anything solid, but they did send us home on a fancy, quite expensive pre-digested formula for her to eat. And believe it or not, that did seem to do the trick. We were given instructions at that point that Kaydee was not to be laying on her back flat so they suggested we put her in a carseat to sleep, or a bouncer because they positioned the babies to be more upright. So we did just that.
All was going well for our Kaydee girl, she was growing and thriving and we couldn't be happier. But at around 7 months of age, we noticed that when Kaydee would sit up, she leaned over to one side quite a bit. At first we thought that she just didn't have good trunk control. We didn't think much of it until the next month when we were at my parents house for Thanksgiving. I have a cousin that is a nurse and she was there that evening. So I had her look at Kaydee while she sat, and she thought that we should mention it to her Pediatrician because it definitely looked abnormal to her, so that's what we did. The next week we took her in to see the doctor and the doctor agreed, it was abnormal and referred us to a specialist in San Diego at the Children's Hospital. We were able to make the appointment for the following week, the first week in December. I remember when we were traveling there, see San Diego is about 3 1/2 hours from Blythe, where we were living, and again, I wasn't too terribly worried, but that all was about to change. Kaydee saw Dr. Wenger for her first visit. I remember we did x-rays and then the doctor told us that Kaydee would need MRI so that we could rule out any tumors or growths that could be causing her spine to grow the way it was. The x-rays showed her little spine looking like the letter C. So we had the MRI done and I remember them telling us it would take a few days for the results....talk about the longest wait of our lives. Tumors? Growths? Those were definitely not things that I had thought about, and naturally my mind was all over the place...especially in the bad places. How could this be happening to MY baby girl? I was a mess! I remember the day they called me with the results to the MRI, I was at work, I worked at a Methodist Church at this time, which I thought was a great place to be considering I could get either good news or bad. There were no tumors or growths, her diagnosis was Infantile Idiopathic Scoliosis. What is that you ask? It's Scoliosis, in an infant, of an unknown source. I was wipping my brow over the no tumor/growth news, but I was scratching my head over the scoliosis news. The doctor also told us that he wanted to send us to a different doctor, one that also worked in his department, that speicalized in Scoliosis. His name is Dr. Peter O. Newton. We saw Dr. Newton and after looking at her x-rays, he explained to us that typically in kids this young, remember, Kaydee was only 8 months old when she was diagnosed, observing and monitoring is what they do. So we went back home and scheduled a 3 month follow-up appointment. At Kaydee's first x-ray, the curve in her spine was 33 degrees. At her 3 month follow up, Kaydee is now 12 months old, the curve was 53 degrees. Not good....not good at all. So Dr. Newton suggested that we put Kaydee under anesthesia just like they would when you have surgery, and shove her back over to the opposite direction it was growing in, so as to make it straight, and then apply a fiberglass cast. What this does is basically trick the spine in to growing the other way, so it will straighten things out. I remember the doctor and the nurse that works with the doctor telling us that she would be casted over the shoulders, over the back, down thigh to the top of the knee and over the tummy with an opening left for her to be able to breathe. So we scheduled this casting for the following month. Kaydee was just 13 months old when she had her first procedure done. She didn't know how to walk yet, she couldn't talk much other than a hand full of words, and she was still in diapers. We can handle this I said to my husband, and then they called us to tell us she was waking from the anesthesia. What I saw that day is still hard for me to think about. Nothing that they told us or even that my mind could have imagined could explain what I was looking at. Our poor baby was laying on her back in this huge hard cast that was harder, thicker, and uglier than anything I had ever seen. She cried as she moved her arms and the fiberglass cast scratched her skin, it was one of the saddest things I have ever seen in my life. I was starting to wonder in that moment if we had done the right thing. Looking back now, I know that we did. The instruction for Kaydee was to be in this cast for 6 months. Diaper changing was a joke, I had to stick one diaper over her and tuck it under the cast, then take another diaper, a bigger size, and put that over the diaper I had shoved under the cast. And no bathing in this cast. Have you ever taken care of a 13 month old? It is no walk in the park and baths are a big deal to keep these kiddos clean. This was turning out to be what felt like a sick joke. 6 months? How on earth were we ever going to make it 6 months in this thing? WE? How was SHE? Oh it didn't happen, we lasted 3 months in that cast. And when we took Kaydee back to Dr. Newton after spending three months in that cast, the x-rays showed no improvement. Wow, we were blown away and beside ourselves. How was that even possible? Who knows, but it was. So the doctor removed the cast and told us he wanted to do more monitoring/observing. And we went home. 3 months later we went for a follow-up, and this is where things went from bad to worse. It was October 2006, Kaydee was now 17 months old and the x-rays were worse than before. Kaydee now had an 88 degree curve in her spine, her spine looked like the letter S, and the doctor was worried becasue he felt that any more observing/monitoring would just result in more curvature which would then result in Kaydees heart and lungs getting squished/compromised. So he told us that Kaydee would have to have surgery. He would insert 2 titanium rods into Kaydee's back that would anchor onto the top and bottom portions of her spine. These rods would be adjustable so that they could be lengthened every 6 months to grow with Kaydee. So we were just hit with the news that our only daughter would have to have surgery, and that these surgeries would now have to take place every 6 months. Until when we asked? Until she reaches puberty or had done the majority of her growing, OR until her body won't allow us to do any more surgeries. Some people had asked me if that was hard to swallow, hearing that news. Hard to swallow, I nearly choked. The only other option was to do nothing, and that could kill Kaydee if her heart and lungs were squished, I could never do that. So it was surgery. Kaydee had her first surgery in November of 2006. And she had surgery every 6 months after that until July of 2014. Some times we did surgery at 5 months and other times we did surgery at 7 months, it all depended on school and holidays and things like that. Oh and I forgot to tell you that we moved away from California to Nebraska in 2008, maybe that will be next.
In August 2008, the economy in California was horrible, I was working 2 part-time jobs and my husband had just lost his job. So on a hope and a prayer, LOTS of prayers, we packed our family up, Lance was 6, Kaydee was 3 and Riley was 1. My husband Isaac was born and raised in Nebraska, so it was moving closer to his family that brought us here. I was all for it, under a few circumstances. And the one major one was that Kaydee and I fly back to San Diego, CA every 6 months for her scoliosis surgeries. So many people, more people than I can count on my hands and feet, have asked us why we don't just pick a doctor in Nebraska instead of traveling half way across the country for these surgeries. Well I will tell you why. Dr. Newton is the most amazing surgeons I have ever met in my life. Now yes, to be honest, I have only met a few surgeons in my life, and none of them have been surgeons for me, because I have never had surgery, but the way that this man has treated our daughter and even us as her parents, is priceless. Kaydee has trusted this man from the very beginning and all of his staff too. We never feel scared to send her off to surgery with Dr. Newton or his fellows. Are scared? Yes, but not because we don't trust the doctor or fear that he could do anything wrong. He is the best of the best and we wouldn't change him as Kaydee's surgeon for ALL the money in the world. She considers him more than just her doctor, she trust him, and so do we. So why do we travel far and wide? Because you can't buy trust like this. You either have it, or you don't. So since 2008, Kaydee and I have traveled back and forth to what is now Rady's Children's Hospital of San Diego, for all of her scoliosis surgeries.
Last July at one of our regular 6 month pre-op appointments Dr. Newton came into the room and shared with us what we thought was the best news we could ever hear. See, a couple of years ago, in San Diego, they had inserted MAGEC Rods into 2 kids. These MAGEC Rods were controlled magnetically. Meaning that these kids didn't have to have surgery every 6 months to lengethen the rods, the magnets did this instead and it didn't require surgery, other than the intital implantation. Well Dr. Newton told us that he would like put the MAGEC Rods into Kaydee......I was speechless, I was speechless and I cried. I cried like a baby. Our baby girl wouldn't have to have surgeries every 6 months any more!!!! I couldn't wait to call my husband back in Nebraska and share the good news! See, because of financial costs and because we have 2 sons as well, it was almost always just Kaydee and I flying out to San Diego for her surgeries, so Isaac wasn't with me when we got this good news. He couldn't believe it, we were both in shock and beyond elated! So that very next day, Kaydee was prepped for surgery and the MAGEC Rods were surgically inserted. After 5 days in the hospital Kaydee was realeased only to be re-admitted that same night due to an allergic reaction. We still to this day do not know what she was allergic to, but it was awful. That put her in the hospital an extra 3 days. And bless her heart, no complaints out of her. Now me on the other hand, I wanted out of that place! Kaydees allergic reaction subsided after lots of creams and medications and it was back to Nebraska we went. Kaydee had her first magnetic lengthening in November 2014. It was one of the coolest things I have seen ever. A huge magnet is put up against a magnetic spot in Kaydees spine and the magnet is connected to a machine/motor that moves these rods magnetically based on the length you tell it to. It literally took less than a minute. LESS THAN A MINUTE!!! Here all these years we had been traveling 1,500 miles one way to have surgeries and pre-op appointments and post-op appointments and all of a sudden we get to show up for a doctors appointment and do a procedure that lasts less than a minute?!?! Are you kidding me?! It felt like a dream. And now as we look back, we see that we got to dream for awhile.....
Just a couple of weeks ago Kaydee and I went back to San Diego for her second magnetic lengthening. We were due to go back in March, but due to my schooling, we had to change the date to April. See, I am currently in Nursing School to become a Licensed Practical Nurse. I know what you must be thinking, she had 3 kids, one on the way, a daughter with scoliosis that requires lots of traveling and expenses, AND she's in school too? And just to add to that, I also work part-time to pay the mortgage. What can I say, I guess I am an over achiever, or one that likes a challenge. Back to Kaydee, so on April 9th (just 11 days ago) Kaydee and I woke up in beautiful San Diego, got ourselves ready and headed to her doctors appointment to have her back magnetically lengthened. We did the usual, x-rays, height, weight and off to the room to wait for the doctor to come in. After 45 mins, we still didnt' think anything was wrong. We just thought that they were busy. So the doctor finally walked in, gave Kaydee a huge hello and a hug and asked how she was feeling. "Fine!", she says in her normal bubbly giddy voice. And the questions continued from there, any pain, any discomfort, does it hurt when I do this, does it hurt when I touch there, and it even took me a minute or so for it to register. Something was wrong. He never asks this many questions, not questions that would indicate a problem, and these questions definitely indicated a problem. So I said, "Somethings wrong isn't it?" and it was then that he gave us the bad news. The x-rays showed that the magnetic rod on the ride side of Kaydees spine was broken. Broken.....now that was a word that we had never hear in all the years that Kaydee has been having these surgeries. Hooks have come unhooked and screws have come loose, but she has never broken any of the hardware. Until now.....like I said, the rod was broken, and it was clear from the picture of the x-ray, it was broken. The doctor also said he thought that the 2 screws on the top left side of her back were loose. And he said that he thinks the reason that the rod on the left side of her spine wasn't broken was because the screws on that side had come loose. I can only imagine the look on my face as he told us this news. There were 2 doctors from over seas in the room too, this hospital is a teaching hospital, so often there are doctors from across the world following Dr. Newton. I don't think I noticed them until they were all leaving the room. And thank goodness for the nurse in the room, she handed Kaydee and I a box of tissue. Kaydee began to cry when she heard Dr. Newton tell me that the rod was broken.....and when she cried, I cried. I couldn't understand how this could happen, and luckily the doctor explained to Kaydee, it was nothing that she did. It was just one of those things that could happen. After getting my composure, which took me God knows how long, he began to tell us what our options were. Basically we had 2 options. One option was to do surgery and attempt to fix the broken rod and re-enforce 2 new screws, but this option wasn't a for sure deal. The rod could break again and the screws could possibly remain loose. Then there was Option 2, we could do Kaydees final surgery, where they would fuse her spine and it wouldn't grow any longer for the rest of her life. We have known from the very first time they diagnosed Kaydee that we would have to fuse her spine, but we thought she would be about 12 years old. She is 10 now, what's 2 more years you ask? Well Kaydee is only 4 foot 2 inches tall right now, so unless her legs do a LOT of growing, she is going to be rather short. As her mother, I worry not about Kaydee, but about the world we live in. Will the kids make fun of her if she is shorter than them all? Will her body be out of porportion? Will she be able to have children? My heart hurts just thinking of all the unknowns. Can Kaydee handle this? Oh gosh, that isn't a question in my mind, ABSOLUTELY! In all the years, 9 to be exact, and all the surgeries, I stopped counting at 15 surgeries, there is one thing that has remained consistant, Kaydees strength and courage. She doesn't complain, she doesn't throw any fits, she even looks forward to staying over night in the hospital because she says their breakfast is the best, especially their scrambled eggs! My eggs must be terrible is what you're thinking huh? LOL, I tell you, this child of mine has given me more hope, strength, courage, love and inspiration than any other person in this world. I thank God every day for giving us and entrusting in us one of his angels, and that is exactly what she is, she is our angel.
So which option did we pick? We chose the second option, the final fusion surgery. Which to be honest, wasn't the hardest part of all of this. The hardest part of all of this is the time frame we have been given. The doctor didn't want us to fly back home, he wanted us to stay in San Diego and have the surgery in the next couple of weeks, but I begged for time. And he gave it to us, but he only gave us 4 weeks. I had to get back to Nebraska to see my husband and our boys and to surround myself with support. Not only that, I had to get back to work and school so that I could try and squeeze all of this in my schedule without losing anything, my job or my place in nursing school, after all, both are vital parts of our survival now and for our future. So Kaydee and I flew home on Monday, April 13th and we scheduled her surgery for May 6th. Now this is where all of you come in. Not only do I not have much in the books for Paid Time Off, I think I may have 28 hours of combined Sick & PTO, but we just got back from California. It takes us months to save up for these trips. We don't have months this time, we literally have weeks, her surgery is in 16 days. Between plane tickets, gas money, and money for food, we could sure use some help financially. I have no expectations for this fund, like I said before, if the only thing that I, myself, get out of this fund is to raise awareness, then I will be able to rest my head soundly at night. But I am not here for myself, I am here for our daughter, I am here for Kaydee. Anything that you can give will be appreciated, even if it is just your time in reading her story or kind words of encouragement, a prayer, or even sharing your story with us.
Thank you and Blessings to you all,
The Auld Family
Isaac, Cynthia, Lance, Kaydee, Riley and baby girl due in September!
Organizer
Cynthia Auld
Organizer
Geneva, NE