Thank U for helping Edy pay for Surgery, Expenses
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$4,160 Raised
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Nine-year-old West Texas girl needed surgery to protect her kidneys and preserve quality of life -- this is the third surgery for her and the family needed assistance meeting this goal and paying for on-going medical expenses ... Thank you all! More ...

Surgery Necessary to Repair the Tubes/Valves on Kidneys

Nine-year-old Texas girl needs surgery to protect her kidneys, be healthy

Edy at her last healthy birthday

The Danger Resurfaces

Edyn "Edy" Lewis was born with a defect in both of her kidneys valve systems. She has had two surgeries in the past nine years to protect her kidneys from damage due to this congenital defect in her urinary system.  Now, a little over 5 years following her second surgery, Edy's surgery has failed. Although she remained relatively healthy following this surgery, we still had to watch certain things – no swimming, no sleepovers -- but overall she was doing well and her kidney’s were protected. She did not have to be on prophylactic antibiotics during this time and was free from allergic reactions to medicines. Then, last year, she stopped eating and drinking. We had to take her to the ER. She became severely dehydrated and was unable to keep down medicine. The culture at the first clinic we had gone to came back with a MRSA infection. Then, she had many successive infections over the next few months.

 

She had another trip to the ER and multiple trips to clinics over the next 6 months. We took her to the specialist, who ordered the imaging test which confirmed our fears – Edy’s second surgery had failed. Not only that, but the ureter tubes were larger and more mishapen than before when she had the second surgery, at which time they were too big for an adult.

 

Her first two sugeries were minimally-invasive. Now, there is a different surgery, but it is much more costly, (in the 6-figure range when done on both kidneys). This surgery will be much more invasive. She will have to have her kidneys disconnected and work will be done to join the multiple tubes she has on one side. On the other kidney, they will try to reform the damaged tube to taper. Then, the tubes will be reattached in order to allow the kidney's valve system to work properly. This is the surgery she has to have in order to be well. The cost for it exceeds our resources, but we are determined to get her this surgery this time because the more invasive surgery will have a chance of curing her. Although she still may have issues with potty training, her health, her heart, and her kidneys would be protected. We do not want to take a chance that later in her life she would suffer from high blood pressure or be forced to be on dialysis. We wan to give her the best chance to be safe and healthy and have a good life.

Through all the hospital stays, Edy has been a real fighter.

Strength in Midst of the Storm
Edy has had painful bouts with cystitis ... urethritis ... pyelonephritis (all basically infections in various places in the urinary tract and kidneys which she is more susceptible to because of her reflux). Between bouts, Edy enjoys playing with her sisters, playing music, collecting rocks and learning about geology. Like so many of the children we have met in our time in the Children’s Hospitals, Edy most wants to just “be a normal kid.” She likes watching The Incredible Hulk TV series, reading her comic-book bible, and doing art. She enjoys telling jokes and listening to my stories about the good old days, playing games, and Barbies. But she’s also incredibly bright, and shines beyond normal in some areas – I find her taking things apart to see how they work. She enjoys science and likes inventing things. She’s always picking up odds and ends around the house, and building new things. She likes watching Rocket City Rednecks and McGyver. Excelling in some areas, she still struggles with very basic things, like potty training, because of her illness. It frustrates her that things that come easy to other children have been very difficult for her to master. Even so, she is hardly ever bitter or resentful, although she does ask why it has to be her. It is that gentle spirit of strength that is such a joy in our family. Others have remarked about her strength and character, her willingness to help others, and her loving kindness. It's something I see evident in her closest family relationships.

best sisters

Her younger sister, Ele, (pictured with her above) says she is the "very bestest sister in the whole world." Every time Edy is sick, Ele says how much she is worried for her, how much she wishes she were well and at home. It scares her to think of someone she loves being so gravely ill. She wants to do something to help her sister, and so I asked her if we could use this picture of the two of them together for our fundraiser online. The picture speaks volumes to me of not only their relationship but also Edy's caring heart.

 

It shows her smiling and happpy and beautiful on what she has deemed one of the "funnest" days we've ever had -- having their picturs taken at the mall. It was just a few days after she had been in the ER getting an IV because she was unable to eat or drink from a severe kindey infection, and when taking the pictures she wanted to keep on her hospital bracelet. I told her to cut it off for the pictures. She looked really disappointed about it, so I asked her why.

 

She said the bracelet reminded her "that no matter how sick” she feels, she “can get well."

 

The thought made tears come to my eyes. I said, “Then you keep it on.”

 

That day, we took the pictures, had many smiles, and enjoyed "looking pretty." I want my daughter to see many, many more happy days like this, and so this was the cover picture I picked. I want the people that help Edy to know that they are helping to make that happiness and health a reality for my little girl.

kidney

A Humble Request

My friend sent me the link to this website, and I felt like it was a good option to let others help in Edy’s care, if they wanted to, without any pressure. I am creating this funding campaign to ask others to help us provide for this surgery that my child needs. It has not been easy for me to do. Family, friends, or strangers -- I find it difficult to ask anyone for anything unless I have no other choice. But in this case, I am compelled to try to explore every avenue in order to give Edy the best chance at healing possible, so I am asking for help. It is something I am very humbled to ask, but I feel I have to try every means available to help my little girl.

 

I pray that the Lord guides the doctors in their treatment, and that from now on she can live a healthy life. If you are able to help us to do this, I can never thank you enough for it: but I want you to know that I am grateful every day, for the assistance you can provide. Any money provided will be used to pay for her surgery, the follow-up care, and any additional expenses for medication and diagnostic tests. If you can not give monetarily, I am simply grateful that your read her story, and perhaps can share it with others. I ask that you send your prayers and good thoughts her way as we seek treatment for her illness.

thank you

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"How We Got Here"

READ EDY'S WHOLE STORY BELOW

  Edy is born.

Eden "Edy" Lewis was born with a head full of fuzzy hair, a lovely smile and a gentle nature 9 years ago. By all appearances, she was perfect and beautiful when we carried her home. We were so blessed and happy that day, as we have been every day since to have her in our lives. But as many of you know, a little over two weeks after her birth she became deathly ill with sepsis.

  

Edy had been a bit fussy the night before and I had put her down early after her evening feeding. When I awoke, I realized she had slept almost through the night, or so I thought, and when I came in to check on her in the early pre-dawn hours, she was difficult to wake. I remember she felt very warm, and I thought it was the clothing she was wearing, So I started to remove her footie sleeper. Then, suddenly, she began violently shuttering. Then, she was shaking. I called out to my husband. She started crying in this repetitive, breathless scream that could only be described as sheer terror. We rushed her and older her sister (who was just a bit over a year herself at that time) to Lubbock. Edy cried like she was burning alive. We called and our doctor, a wonderful man, Dr Robert Stripling, saved my little girl’s life that day when he had us come straight to him, walked us past all the admitting doors and straight into the back door of the ER. I thank God every day for Dr. Stripling, who was not only an excellent doctor but one of the finest men I have ever met. A veteran, Dr. Stripling's character, his kindness, and his level of medical expertise made him second to none.When my first child had been born prematurely following pre-ecclampsia during pregnancy, he had helped us navigate through heart monitors, infant CPR, and respritory therapists -- in addition to all the hurdels that one goes through following the birth of their first child. In many ways, we felt that he, Rayna and Lori were a part of our extended family. Now, as he cradled Edy in his arms and walked us through the halls of the professional medical buliding to the Children's Hospital, it meant so much to me to have a doctor whom we trusted so very much. He walked us striaght throgh the doctor's entrance doors to the ER and called doctors and nurses to his side. Because our older daughter was not allowed to go with us, Dr. Stripling suggested my husband and I split up. I would follow Edy while he kept the eldest in the waiting area.

 
Please Save My Daughter”

That was the prayer echoing through my mind as I followed Edy through the hospital that day. I felt helpless as I watched from a corner as they rushed in to asses her condition. They poked and prodded her, trying to find veins in such a tiny newborn arm. Her temperature was skyrocketing, and I remember looking at her little body so tiny and frail on that big stark white hospital table. They kept asking me questions, many of which I didn’t know how to answer. Family history? ... Food history? ... Pets? ...I remember worrying, if there were something they needed to know and I did not get it right, thinking what could happen to my baby girl? She wasn’t crying now, she was limp, her skin had a strange yellowish-ashen hue, at times she was still red with fever, then others her fragile little fingers would become cold and blue as she suffered the chills, her skin clammy to the touch. Her heart rate would race, then slow -- changing quickly and without warning. In contrast to that morning at home -- when she was crying so strong, now she just whimpered.

In Hospital

I remember thinking at the time that I would never be upset when this baby cried, realizing that I would rather see her cry than be despondent. I tried to comfort her when I could hold her, although it was difficult to do so through the early morning as we rushed her through test after test in the children’s hospital. Slowly the test results started coming back. I know it was not as long as it seemed, but for me, as a mother, it was like an eternity. Nurses would come, and I leaned forward, expectant, but the answer was just that they needed more tests or we would have to ask the doctor -- answers like that that are so hard to accept when your child is ill. As the hours ticked by, her condition deteriorated quite quickly. The doctor suspected meningitis, and wanted consent for tests which carried increased risk. They gave me this paper to sigh listing off all the awful things that could result from it -- I was so scared to make the wrong decision. I wanted to call my husband, but there was no time. The doctor looked at me and said, “She could die. We need this test now. We have to know if she also has meningitis because it will affect our course of treatment, and if this is what she has then at this stage every minute counts.“

 

I was grateful when the lumbar puncture came back and said that she did not also have  meningitis, but if not that ... what was making her so ill? The doctor assured me that we had learned much from the previous tests, and because we had done the lumbar puncture, the list of possible causes was much shorter now. The cultures would say if we had the right medicines to cover the infection, they started a couple of antibiotics all at once, hoping her kidneys were still able to safely handle these antibiotics, hoping the disease and resulting toxins would not affect her heart, liver, respiratory system or brain.

 

A Congenital Defect with Genetic Origin

After testing her spinal fluid, a radiological test was ordered, and it was then we discovered she had a defect in her urinary system (VUR), which affected her kidneys and prevented the valves and tubes from working properly. The defect had allowed germ-infested urine to be injected into her kidneys on a daily basis, ultimately causing the infection that led to sepsis, an infection of the blood that can spread to affect all the vital body systems. The doctor explained that at her age, her underdeveloped immune system had allowed this to progress and spread quickly. That is when I remember the hospital doctor looking at me gravely, and telling me that the situation was “extremely serious” and that he “was very concerned that she might not survive.” The infection was a very aggressive necrotizing bacteria, and it was consuming her kidneys as the sepsis toxins spread through her body, being delivered to all her vital organs through her own blood stream.

 

At the time, I didn’t realize this, but after the years we have spent in and around children’s hospitals, I can tell you that Pedi-Hospital doctor’s hardly ever say something like that to the parents. The fact is that because her immune system was undeveloped, she was a much greater risk, and every hour was critical. We had missed early symptoms of the infection overnight, and the count in her blood was extremely high. Her fever was over 107 degrees. Both of her kidneys were enlarged, both her kidneys were infected, and they are necessary to our survival. At the stage she was in, hemodynamic and respiratory collapse was a serious concern. Hydronephrosis was evident in the scans, which can lead to the long-term complications with bloodpressure. Treatment was complicated by the fact that the bacteria that she had, Klebsiella pneumoniae was gram-negative, encapsulated, and often resistant to multiple antibiotics. Additionally, the bacteria carried with it serious long-term risks, being identified as the trigger for the extremely painful degenerative inflammatory disease, Ankylosing Spondylitis. A disease causes fusing of the vertebrae in the spine over time, leading to pain and postural disfigurement in genetically susceptible individuals. Had I known these things on that day, I might not have been able to stand it. I fear I would have not been able to be strong for my daughter. As it was, God kept me focused on what could help – prayer and love.

 

The doctors began their IV antibiotics and we began praying. I was her constant companion during those raining days in the hospital, I remember looking out at the cloudy overcast sky from the children’s hospital room and praying that God would let me feel what she felt -- spare her pain and suffering, but please allow her to live.

  

She suffered through daily catheters, blood tests, an infiltrated IV, periods of time when she cried non-stop. All I could do was rock her and try to sing to her, but sometimes, I had to put her down in the hospital bed and walk away. There was nothing I could do to make this better. I lay in the bed next to her little clear baby box and I just started to sob. I knew the only person who could save my little girl was God, and I prayed he would guide the doctors to the right treatment in time.

 Just at 1 year

Prayers Answered

God blessed us and a little over three weeks later, Edy was able to return home on medical treatment. We were informed that she would have to stay on these medications until she was able to have surgeries to correct the defects. They cautioned us because of the severity of her case, that we would have to constantly monitor her, and try to protect her kidney function. There was damage from the previous infection, and also the concern that pressure on her kidneys would continue to damage them. She had multiple hospitalizations and ER visit over the next year as we waited. We had to try to stop that as soon as possible, so rather than wait till age 2, we chose to do the least-invasive surgery when she was just over 1 year old. Our prayers were answered, because she grew faster than anticipated, and was able to have the surgery at a younger age, thus protecting her kidneys from the grade5 hydronephrosis pressures. If another more invasive surgery was required in the future, this would give her time to grow before that and give her a better chance for a complication-free surgery. We hoped, however, that the first surgery would be sufficient and she would not require additional surgeries.

  

Unfortuately, that was not to be.

 
Initially, the surgery was successful. We were relieved when Edy did not have to have daily medications and we were free from the ever-present concern over allergic reactions. My husband became employed, but it was through a small millwork construction company, and they did not offer insurance.

 

It was time for a 2nd Surgery.

 Edyn after her 1st surgery failed. Time for a 2nd Surgery.

$$$ and Sense 

So, at that time, we were employed without insurance, and we applied for the programs. We were told we made $50 too much per month for assistance. At that time, most of our money was going to pay down debt, but Edy’s medical situation was serious. The doctor did not want to wait, because the condition was even worse when this first surgery failed, and the pressures were the highest degree that is given for the condition. The pressures alone were doing damage. So, we opted to do a repeat of the less-invasive surgery she had before, to try to buy more time. We could afford the less-invasive surgery, whereas the other surgery was completely unattainable for our family.

 

Even at the lower cost, our family exhausted all our resources to provide her down payment for the hospital and pay for this surgery, the doctors, labs, imaging -- and we are still paying down some of those debts. Going through all that at one time – dealing with profound grief, economic peril, health concerns all at the same time – I can honestly say it was the only time in my life that was more stressful than now.

Edy has a strong faith I admire in one so young

Although we did come out of that period of our lives with more debt, through God’s grace, we were able to refinance and keep our house -- but just barely. It is shown so clearly to me, over these past years, how God is with us, even in the valleys of our lives. How he can make a way when we can find none, under the protection of his loving hand. And for this understanding -- for the faith God has given our family -- we are truly blessed in the midst of illness, economic dangers, or loss.

 

 

 

The Danger Resurfaces

For a little over 5 years, Edy remained relatively healthy. We still had to watch certain things – no swimming, no sleepovers -- but overall she was doing well and her kidney’s were protected. Now she is in need of the more invasive surgery to correct the defects so she can be well and the condition can be surgically corrected, long-term. This reattachment surgery is much more costly. This surgery will be much more invasive. She will have to have her kidneys disconnected and work will be done to join the multiple tubes she has on one side. On the other kidney, they will try to reform the damaged tube to taper. This is the surgery she has to have in order to be well. The cost for it exceeds our resources, but we are determined to get her this surgery this time because the more invasive surgery will have a chance of curing her. Although she still may have issues with potty training, her health, her heart, and her kidneys would be protected. We do not want to take a chance that later in her life she would suffer from high blood pressure or be forced to be on dialysis. We want to give her the best chance to be safe and healthy and have a good life.

Good times when Edy was feeling well

We are applying for assistance and other aid, but I am not sure if we will qualify or if these assistance programs will work with our medical providers. We are unsure what complications we might face, and medical costs are never certain. If we are allowed on or accepted to programs, given my past experience with them I do not expect that it will continue to cover the expenses we will have for additional evaluations and testing for follow-up care coming in the next year. When you take steps to make things better -- like taking on extra jobs -- it can bump a family off the program. I want to make sure that we do every thing we can to take care of our child and get her the medical care she needs, regardless of the programs, because I have found that one can not rely on them. When it comes to health care, sometimes timing is critical and depending on these programs alone can leave a family with options that fit the program rather than what is in the best interest of the patient's care. For this reason alone I feel it is important for us to exhaust every option.

 

I was explaining the situation to my friend, Van, and she later sent me the link to this website, where we could raise funds. Knowing about Edy's condition, other friends, co-workers, and family had expressed a desire to help. I had mixed feelings about asking for help, but after talking to friends, I felt like it was a good option to let others help in Edy’s care --  if they wanted to -- without any pressure. Thus, I am creating this funding campaign to ask others to help us provide for this surgery that my child needs. It has not been easy for me to do, as I have that Texan Independence by-your-own-bootstraps mentality at my core. Family, friends, or strangers -- I find it difficult to ask anyone for anything unless I have no other choice. But in this case, I am compelled to try to explore every avenue in order to give Edy the best chance at healing possible, so I am asking for help. It is something I am very humbled to ask, but I feel I have to try every means available to help my little girl.

 

I pray that the Lord guides the doctors in their treatment, and that from now on she can live a healthy life. If you are able to help us to do this, I can never thank you enough for it: but I want you to know that I am grateful every day, for any assistance you can provide. I pray that God blesses you, and your families, regardless of a gift given -- I know many times in my life I have wanted to give to a cause and not been able to, but I have been able to offer kind words and prayers. I want you to know that any money provided will be used to pay for her surgery, the follow-up care, and any additional expenses for medication and diagnostic tests now or in the future. If you can not give monetarily, I am simply grateful that your read her story, and perhaps can share it with others. I ask that you send your prayers and good thoughts her way as we seek treatment for her illness.

 

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