Riverlyn’s Healing Journey

Thank you everyone for hanging in there with us as we continue on the journey to see ALL the Healing that is available for Riverlyn come to fruition. 

Since truly “coming home” on Sunday, April 28, it has been almost a month together at the house as a family. Honestly, we remain exhausted but so thankful for having so many days in a row at home.

This past week things got tough. We are not sure why yet but Rivy began to have a difficult time digestively which ultimately affected her breathing and her ability to sleep at night. 

This morning around 2amE, Rivy began to experience extreme discomfort and eventually severely labored breathing. It reached a point around 5:30amE that we made the call to get her to the Emergency Department (ED) back at Levine Children’s Hospital (LCH). During her time in the ED her lung collapsed and they did a port (IO) in her leg bone as an emergency move to get her hydrated…it was a very scary experience. She got a chest tube to drain the air and reinflate the lung as well. 

As of now, Rivy has recovered from the urgency of the day, her lungs are doing better (on oxygen) and she is now in the Pediatric ICU (PICU) for an undetermined amount of time. She has had several tests run and is in the process of a blood transfusion via her new PIC line. The medical team is also looking closely at her mechanical heart valve to determine why it is currently underperforming. One of the leaflets isn't moving like it should. The two theories are (1) there may be a blood clot sitting on it (this can be treated by medication) or (2) tissue has grown around it (this can only be handled surgically). We will know more as we watch and wait to see if function improves with medication over the next few days.  

We appreciate each of you for your heart & prayers for Rivy and our family. Thank you also to our family and friends in the region who have stepped in to help in many practical ways!