We had a little scare last week when riding bikes from parking lot to the pump track. There was a small incline and Zayne couldn’t catch her breath. I could hear her wheeze when she tried to breath. It was very scary for Zayne. It reminded me of the first symptom that I noticed the week before we were in the hospital for rejection – the same thing happened while biking up a steeper hill. She didn’t feel well for 4 days (even had to sleep with 2 pillows to breath better at night).
She still had fun at the track, but only 1 loop and rest at a time. Very different from the last time we visited when she rode her bike a couple of miles and then rode non-stop for an hour before riding back to the car.
Yesterday, IVIG #5 was completed. Once again, the IV went in nicely since Zayne worked to hydrate herself. Tylenol yesterday and today have helped with headaches. This time, the headaches weren’t as bad (the brand was changed since side effects were bad last time).
Because of last week’s biking incident, Zayne was given IV Lasix and has had her meds changed up. As usual, heart diagnostics aren’t showing any improvement (or un-improvement). Med changes include a Lasix increase and replacing Enalapril with Entresto. Entrosto was approved for pediatric use last October, and it has been shown to more effective in treating heart failure. She starts the new med on Sunday morning. Hopefully, Entrosto can help with heart failure and we can get her BNP to go down.
Another heart cath is scheduled in November instead of next June. Docs want to check out her heart to see if there is a reason for the lack of improvement.
