An Extended Stay

We have hit a bit of a bump. Typically around this time in the healing process heart transplant patients are being transferred down to a less intensive floor or being discharged from the hospital and begin their days at the clinic. Sadie's entire team is trying to make that happen but Sadie is a bit of a unique case. 

With Sadie's carvajal syndrome there's not much in terms of medical literature on the disease itself - there is even less on patients that have had a heart transplant that have it. In fact her entire transplant team is doing a full medical case study on her and have asked for permission to publish papers on her. 

Currently Sadie's heart rate is on the lower side- which could be very normal for her and they expect the rate the increase when some of the more potent medications she was on pre transplant move out of her system- but it could take months for that to happen. They have put her on caffeine to help increase her heart rate as well. When they first told me about the caffeine I immediately pictured Sadie sipping on a morning cup of coffee with me- don't worry, it's just a small pill she takes in the morning with applesauce instead. 

There are two path's forward from here. One is that she has to have a pacemaker implanted. Because of her size and the amount of growing that still has to happen no one is eager to have this be the route forward unless necessary-and it very well could be. The other option is that we give her new heart time. We watch it and make sure it's still doing it's job while it's waking up and her body is still working to get the old medication out- time could very well be the answer.

Tonight is the big test- they've set her lower parameters extremely low- they are going to see how low her heart rate goes on its own without intervention- while constantly monitoring it and making sure that it's still doing it's job at such a low rate. It's nerve racking for everyone involved except for some very calm EP cardiologists that completely grasp the concept of a brady heartrate being completely fine for a very unique situation- the amount of times I've heard the nurses say "I've never really seen this before" is abundant. She's different. But she's healthy and God has her- she's ready to show to the world what she can do with this new heart, we just have to have faith that a little bit different of a beat is just the music Sadie marches to now.

Another day- another science experiment while we wait. Thank you all so much for your support and your love and especially for the activities to help Sadie pass the time.