Personal stories of individuals and families affected by Kawasaki disease
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Hi everyone my name is Heather and I am writing this for my four year old daughter Milli. Milli was born on September 12, 2009 and was born full term with no complications and very healthy. A mother's dream come true is to have a healthy baby, but we never think of the complications that can happen after the birth. On December 2,2009 my daughter started running a high fever and when I took her to the doctor they said she had contracted a virus. After that little did I know she would never be the same again. On Christmas 2009 millis hands began to swell and she had a minor rash and fever. I then proceeded to take her to the doctor again where he told me she had an allergic reaction to her 3 month shots and that it would soon go away. They prescribed her benadryl and after a week the swelling and rash went down and the fever subsided. Three weeks later it came back and I again this time proceeded to take her to Huntsville hospital instead of the doctor where they again told me an allergic reaction. They also took xrays of her heart and said the enlargement was due to her breathing. They kept her three days and sent her home. I could never get anyone to take me seriously that there was something terribly wrong with my child some may call it mothers intuition I call it god. Anyways on February 16th I had went to work and my mother took care of milli for me at 2:00 my mother called and said she had to take milli to the doctor every symptom came back at its worse and milli had stoped eating and drinking. At 415 the doctor came in to the hospital where he had sent milli for further testing and asked to pray with us that milli had a rare condition called kawasakis heart disease and they were going to have to rush her to the Huntsville hospital by ambulance. When we got to Huntsville milli was immediately put into ICU and had a full staff of heart doctors working to get her stable. At 815 my father had just been in to see milli and when he came out I could see it in his eyes, he fell to the floor and said milli had coded. I will never forget that because my father is the most self controlled person I have ever met in my life and to see him in that state is forever burned in my memory. The next thing I knew we were in a grief counseling room with a doctor looking at me and telling me my baby, my perfect born healthy sweet baby girl, was going to die. My whole existence in this world meant nothing to me anymore. I couldn't imagine who I was going to be without her. They finally got her stabled enough to med flight her to Birmingham children's hospital. I will be honest I was a wreck and Iw knew even though they couldn't allow me to ride with her I wasn't going to let my baby girl go but just enough time to get her down there without her mom with her. The time med flight took flight and left Huntsville I got in my car and the time they landed in Birmingham I was parking in the parking deck. Normally what is a 2 hr drive only took me 45 min. Of course I couldn't go in right away because they had to stabalize her but as soon as they opened those doors to the nicu I was by myut baby and I will never forget how she looked, she had a ventilator coming out of her throat and they had had to paralyze her to keep her from pulling the millions of wires they had stuck inher out. I remember feeling like this is my child I'm suppose to be helping her I'm suppose to protect her and at that point there was nothing I could do. I felt like I had failed my baby. The doctors then explained every monitor they had her hooked up to and how more than likely she would have to stay there in choldrens hospital for the next 6 months. Well a few days went by and milli miraculously got better enough to move to a regular room and then on February 26, 2010 my 20th birthday my baby got to come home. The doctors still to this day can't explain how her health increased as much as it did in so little time, but I know that god put his hand on my child and helped her survive. To this day milli continues to increase in health and although she is still on plavix and asprin everyday she is a very healthy beautiful girl that I thank god for everyday. The point of all this is that if I had known of this disease when milli got sick she might not be on plavix and asprin, but at the same time I am glad that I can help so many more people with children like milli and to get the awarness out. So I want to thank everyone on this forum and the stories you all have shared. Maybe one day we can ease enough awarness to where this disease won't cause harm to so many kids and I hope for millis sake one day there might be a cure. Thank you all for reading millis story and god bless.
She has aneurysms in both the left and right ventricles. Her right aneurysm measured 4 cm and was 100% blocked and her left 3cm and 75% blocked. So since they mis diagnosed her three times she has to be on blood thinners unless they get smaller as she gets bigger.