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Skyla's Challenge 
Welcome to Skyla's page. Skyla had a rare genetic syndrome called Hunter's syndrome. Skyla went home to be with the lord on Oct.04,2008. She will be forever missed!!!
Journal
Thursday, October 9, 2008 3:04 PM CDT Hi guys,
Sadly my sweet Skyla passed away on OCT.04,2008... Skyla had been very sick since Sept.26,2008. She came home early that day from school with a high fever. The only thing was that she didnt have any symptoms. And Skyla was never one to burn up with a fever, I knew something was very wrong. I called her hospice nurse and she got her an antibiotic, so I was hopeful. She had the fever until monday and then her hernia came out and everytime we reduced it, it came back out again a little while later. She wouldnt eat or drink while the hernia was out so she got very dehydrated. I was trying to get hospice to give her some fluids but her medicaid wouldnt pay for it because hospice only provides pallative care and not prevenative live saving treatment. So finally hospice got the approval on the fluids on wednesday and we got the hernia reduced and put her hernia belt on tight to try and prevent it from coming out again, to no avail. It came out about 2 hrs later even with the belt and that had never happened before. Skyla's stomach was so swollen and the hernia was very red and hot to the touch so I knew that things were not looking good. Skyla seemed a little better on fri she was moving around and staying awake for longer periods, but was in a lot of pain from her stomach and hernia. Hospice was trying to control her pain, but it was just to severe. So on sat her fever returned and I knew if I didnt do something that I was going to lose her. So I revoked her hospice and had her transported to a hospital for more aggresive treatment. When I got to the ER Skyla wasnt breathing very good so I told them to put oxygen on her, and then she got a little better but then she started vomiting up blood and I was there trying to suction it out of her mouth. It was the most tramatic thing ive ever seen and will never forget the look on her face. She was so scared and I was scared for her. I told her if she wanted to go for to go and not worry about me. I have never felt so helpless in my entire life and I hope to never feel that again. So I decided to not have her on life support because I knew that it would do more harm than good. So her dr sedated her and place a tube down her throat for the blood. She was finally resting and so they placed her upstairs so we could be with her. He dr told me that she had a perforated bowel and that she had asspirated on blood, that her right lung was full of blood. And that he didnt expect her to make it through the night. We were upstairs and around 11:30 her heart began to fail and we knew she was going so we all just told her how much we loved her and that she wouldnt be hurting anymore. It was the worst moment in my life and I will never be the same. I will miss my sweet girl forever, but in turn I know that she is no longer in pain.
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