Ellie DeRyke

First post: Sep 16, 2022 Latest post: Nov 14, 2022
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Starting on Sunday I had noticed Ellie was breathing faster than she should be and by Monday she was eating less than normal as well so I took her to the clinic.  She had been coughing a little so we thought she had a respiratory illness.  Her oxygen was good and she wasn’t working too hard to breathe so I was sent home with instructions to go to the ER if she hadn’t perked up by the evening .  She had then started vomiting Monday evening so we took her to the ER and they watched her for a couple hours and felt she was ok to go home.  Tuesday she was eating better until the afternoon and she had vomited again at that time. I called the on call physician and he thought as long as she had a wet diaper and she wasn’t changing her respiratory status she could be seen at the clinic on Wednesday as we had scheduled.  Wednesday morning we were seen at the clinic and sent to be admitted to the pediatric floor to get her IV fluids and to monitor her respiratory status.  Ellies oxygen was 98-100%  the whole time but she started to increase her work of breathing and by 8pm on Wednesday night she was moved to the pediatric ICU.  Once there it was found that Ellie’s heart and liver were enlarged and after an ultrasound of her heart we found out that Ellie was in heart failure .  One of the measurements of how well her heart is pushing blood to her body should be >55% and it was only at 27% which is severely decreased function.   The ICU and cardiac doctor in Sioux Falls thought it was best for Ellie to be moved to Omaha Children’s because they have a Cardiac ICU that would be able to give Ellie the support she needs.  She was flown to Omaha around 4:30 am on Thursday.  Once she arrived to Omaha she was working harder to breath so they made the decision to intubate and sedate her to let her little heart rest as much as possible.  They also started her on medications to help support her heart function and move blood better to all of her important organs .  Theirgoal yesterday was to stabilize her  and begin searching for what caused the heart to not pump like it should.  They are searching for possible viral Illnesses that could cause inflammation of the heart, metabolic diseases that could cause it, and genetic reasons that it may be happening.   Those questions may not be answered for a little while yet so we are just praying she continues to stay stable while we wait.  She is more comfortable looking and more pink in color than she was before she was intubated so we are thankful for that. Ellie is a very sick little girl and we don’t know yet if she will regain the function of her heart muscle but we are praying that she does.  I will update in the journal as things change or after they round during the day.  Thank you all for reaching out to see if we are needing any help with our other kiddos and to everyone who is helping allowing Cley and I to remain at Ellie’s bedside.  Please pray for our sweet girl .

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