Ava was discharged from CCHMC Her EKG showed sinus tachycardia, and she now has to go to the cardiomyopathy clinic regularly and get echos every 6 months. She has to have an echo within the next week or so. The cardiologist explained that since she has Mitochondrial disease, she has to be followed closely by the cardiomyopathy clinic. Mito causes heart weakness (and many other heart related issues). I also found out that her last echo showed a small VSD. I didn’t know about that!
She’s home and still not feeling well, but hopefully she’ll start perking up. Her oxygen needs have increased. Her doctors said that she handles any illness a lot worse than “typical” children. The smallest things really set her back.
We met a sweet 12 year old girl with EB from New Jersey. Childlife asked if we could show her and her Mom Ava’s feeding tube. Ava is very proud of her tube and was happy to show it off. Ava was very impressed with this girl’s bandages (she has EB and wears bandages all over her body) and asked her nurse for some of her own. Today the girl is getting her feeding tube put in. I hope she does well.