It was a year ago tonight that we first arrived at Stanford via life flight. UCSF doesn’t have a pediatric heart transplant program and they felt that Hana was going to need one. They were right, although who could have predicted that we would wait ten months before listing her for transplant. I had never been more exhausted in my life than the night we arrived at Stanford. My body ached, I hadn’t slept, and then the worst part was the critical condition Hana was in. They talked to us about ECMO which is a type of heart and lung bypass life support system.
Hana never did have to go on ECMO but they had to he big sitting outside her room, waiting and ready, just in case. I’ll never forget hearing the words of the attending physician in the CVICU, “I’ll do whatever I can to save your daughter’s life.” Chills. Interestingly enough, when we first saw her again in the CVICU this past November she asked me if I remembered her and I told her, “Remember you? I couldn’t forget you.”
My dad flew in that night, my mom had arrived that morning. The social worker had reserved Paul and me a sleep room. When we finally crashed in the room. I could hear an awful noise that I kept imagining was feet running down the hall for an emergency. I kept looking out the door and down the hallway to see if they were running into Hana’s room, but all was quiet. (The noise was things moving in with he tube system.)
Now we are here. Things are so different but we are here at Stanford on this day again. Today they decided to stop Hana’s Berlin Heart pump while doing an echocardiogram. I was nervous. There were two heart failure cardiologists (including one of the Berlin Heart experts), a heart failure fellow, the VAD nurse practitioner, the echo tech and the bedside nurse. The fellow operated the Berlin Heart hand pump, manually pumping while the tech took her images. Then they stopped hand pumping for three seconds. Then they started hand pumping again and then hooked the drive line back into the ikus. Hana didn’t even seem to notice. They wanted to see how well her heart would function on its own without the help of the pump. I don’t yet know the results.
It was otherwise another good day! Hana even tried some chocolate that we received in a package! We also got the official clearance to move about the third floor without a nurse! We had to sign a contract acknowledging the new rules of this arrangement (in some countries people are going home on the Berlin Heart!) but the new freedom will be nice!
Our surprise that the VAD (ventricular assist device) nurse practitioner has been working on won’t be ready until Tuesday – stay tuned!
86 days in the hospital, 67 days post-Betlin Heart, 59 days on the transplant list.