Today marks 181 days that Jeremiah has been waiting for a new heart. He’d been doing relatively well till this past Sunday night when he started feeling difficulty breathing and chest pain with every breath. You could hear crackles in his lungs even without a stethoscope and his oxygen levels were low. Away we went to the ER on Sunday night and he just spent three days hospitalized with pulmonary edema and congestive heart failure (CHF) exacerbation.

We are so thankful for the quick and expert care he received at Children’s Medical Center in Dallas. They worked carefully to get the fluid off his lungs and adjusted his meds even more. We now have a “diuretic action plan.” If he starts showing CHF signs again, we have extra Lasix to give him at home and parameters of when to call or return to the ER. The doctor on call this week said that this episode was his “one free pass.” If it happens again then they will consider more intense treatment (IV Milrinone) or bumping him up to pediatric status 1B (he is currently status 2 on the Pediatric listing). 

Thankfully it was a short stay. We kinda see it as a fire drill – what do we need to prepare for if we get THE call? And he was discharged before Christmas so we are thankful not to be stuck in the hospital over the holidays.

We so appreciate the support, encouragement and prayers from all of you on this journey. We wish you all a wonderful Christmas and may 2022 bring new adventures and blessings to you all.