Riverlyn’s Healing Journey - Update -

It’s been a wild couple of days for us. Riverlyn has recovered from the collapsed lung but our attention is now on her heart. Her valve isn’t functioning like it’s supposed to. Both leaflets (yesterday it was only one) are not moving to full capacity if at all. They’re looking for blood clotting as the culprit for the leaflet suspension but the echo doesn’t show evidence of thrombosis. 

The plan is as follows: 

(1) tomorrow morning go to the cardiac cath lab for non invasive imaging to help provide a clearer picture of what’s inhibiting the valve 

(2) pursue tPA intervention (a “clot buster” medication - 

https://en.wikipedia.org/wiki/Tissue-type_plasminogen_activator) This comes with the risk of bleeding, most dangerously in the brain. The process is to administer the medication and echo after 24 hours. The administration dose would increase for up to a 96 hour period. She’d have to be VERY closely monitored neurologically during this procedure (like every hour around the clock with blood reserves and antidote reserves on standby). The pediatric hematologist said this approach usually results in the 48-72 hour period (but it’s not commonly used in babies and even less commonly for valves). 

Other risks & variables: 

The team feels it’s too high of a risk vs benefit to pursue an invasive cath procedure which could target the tPA at the valve initially. 

There’s a possibility of surgical intervention in the case of a brain bleed and/or open heart valve replacement should the measures be unsuccessful or compromised. 

Prayer points: That the valve returns to normal functioning and in the case of tPA that it does its job without any bleeding. 

Things we’re thankful for: 

Rivy is off respiratory support and she’s pooping well and smiling a bit. 

Nathan got a haircut today. 

Matthew was able to serve our family and partners.

I used DoorDash to have a healthy and delicious dinner.