Life Lately- Prayers and Stability
I have not updated in two months! Oh my goodness- its busy in the hospital. Since our last update Paul has been doing very well. He had another episode of casting after the lymphatic intervention in December and so transplant is THE journey we are on now. Paul remains stable, on milrinone on the cardiac unit at the hospital waiting for a heart.
He has had some signs and symptoms of worsening heart failure, which is to be expected. His echo looks stable though his labs are trending down. For our medical folks, our BNP went from 33 (on 12/9) to 500 something (on 2/16) so that's not great. This is a lab that measures heart function- lower is better- it continues to trend up. He is more tired and winded but continues to enjoy life at home in the hospital so we are grateful for stability! He has had a little runny nose and we recently learned he has rhinovirus (a common cold) which is not horrible and does not take us off the transplant list by any means. This DOES mean we can not leave the hospital room which, frankly, just sucks but it is for the safety of other kids and we care about that very much. We may be able to walk about eventually with a mask and gown on away from the floor- we shall see but until we get a negative test- we are in the room- UGH! We have had some wonderful visits with Mom-Mom and Papi who have come to hang out all the way from NYC and have braved the snow/ ice of the last couple of days!
Georgia Jane had a cardiology appointment in early February where we saw her bicuspid valve and it looks great and is working great so we go back in a year to look again. She also had a first birthday with a party at the hospital and one where we painted pottery with friends and family and an immediate family celebration.
Please keep praying for our family, our sanity, and for the gift of life for Paul.