So much has happened since the last update. After weeks of tests & discussions, we decided we preferred to list Evynn for a heart transplant again (3rd time in her life). She was officially listed in October. Since then she has had an increase in her heart failure symptoms. Evynn has been struggling to tolerate her g-tube feed, she has been vomiting far more often. The thought is that she has so much fluid in her belly that she isn't digesting her food. In effort to decrease that edema she was given another diuretic but this caused her become extremely dehydrated. We ended up at SickKids emerge. Evynn's heart rate was 54 and her blood pressure was extremely low and she had junctional escape heart rhythm. The feeling in the room was that they were anticipating her to code at any moment. They immediately gave her a dose of calcium which instantly raised her heart rate. She was then admitted to the CCCU, her electrolytes were completely out of whack and her kidneys had quit working. She received a blood transfusion along with other interventions. They were able to get her kidney function back and all her electrolytes have almost recovered.
Evynn has now been moved to the cardiac ward and is receiving a med iv continuous infusion called Milrinone. Usually, once a child is on this medicine they are unable to be discharged from the hospital. Occasionally, if a child responds well and stabilizes they can go home and have nursing visits to care for the PICC line (more long term iv, running close to the heart). She will need to be on the Milrinone 24/7, while she continues to wait for a heart transplant.
On a positive note, her personality is returning...
OMG ! You are the most amazing family in the world! My heart goes out to you for all that you have to go through day in day out! And look how Evynn is smiling! She is one tough little cookie! The best of luck to you all as you play this terrible waiting game!
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