And now we have a path…

Over the weekend we had another echo. The Sildenafil (Viagra) didn’t have any effect. We are now out of options other than proceeding down the path to look at a heart transplant. This is scary, frustrating, devastating and a relief, all in one. Within the next day or two we should be officially on the heart transplant list.

We pushed the weekend echo out until Sunday to make sure the drugs had as much time as possible to take effect. Kate’s cardiologist was right there and able to tell us the results immediately. No change from the previous echo. This means that without a heart transplant, Kate’s heart and lungs will deteriorate and eventually stop functioning. We have started the the IV drug Milrinone to help the heart muscle relax and we are hoping that will have the effect it is expected to. Assuming the Milrinone works, we should be able to head home with Kate on an IV pump while we navigate the transplant list process.

While on the transplant list, Kate and at least one of us needs to be within a 4 hour radius of Children’s Hospital at all times. This is tough, especially for Audrey as we had a couple trips in mind to see her family and show Kate off to everyone. Now Kate will not be able to make these.

Kate is still a happy, bubbly, energetic 3 month old. She’s “talking”, wiggling, playing and just flipped over for the first time. She’s asymptomatic at this point. That will change but we’re hoping to take advantage of the time we have before any changes happen before the transplant.

It’s been a very interesting grieving process for me, I’ll let Audrey speak for herself when she’s ready. For me, when the transplant was first brought up, I was scared and shocked. Since that initial diagnosis though, I am somewhat relieved about things. Kate has so much wrong with her heart and the process seemed so endless that is was daunting. This is a new path and is plenty scary but when done, the heart should be much stronger. There will certainly be challenges, like lifelong drugs to prevent rejection but I am actually hopeful.

This has been an extremely frustrating time. For our original hospital stay, we had planned and were ready for an extended stay. This time, not so much. We were expecting an outpatient procedure with a slim chance of an overnight for observation. It turned into a 1.5+ week stay. Audrey has been amazing, having yet to leave the hospital except for a quick dinner out together the other night.

We are definitely working on coming up with some specific things people can help with. We’re going to need all the help we can get. We’ll update here when we have our thoughts together for this.