Yesterday Ellie’s heart rate was elevated most of the day, they gave her bolus and it didn’t really help much. They decided to go ahead and stop the fentanyl and started Dilaudid since she was on the fentanyl for so long and it seemed to not be helping as much. They stopped the INO yesterday and she has been doing good and oxygen has been in the 90s. We are pretty sure she had a seizure last night. They had her weight in the computer as her weight the day she was admitted and they keep it that way for a while. They went in and changed her weight in the computer since she has definitely gained some weight which changed the dosage for her seizure meds so they are going to watch her with the new dose and see if she has anymore seizure like activity.

Today they spaced her albuterol to every 4 hours since she sounds much better and not wheezing. Her heart rate is elevated again today but they are keeping an eye on it. OT came and worked with Ellie today and she did very well with it. She even got to sit up for 5-10 minutes. We are praying she doesn’t have anymore seizures and that her heart rate will come down. Our nurse last night put Ellie’s hair up
credits:Prayers for Ellie