Berlin Heart Day 1

Our Sleeping Beauty with her beautiful braids

Ry had a great night. She is doing very well on her road to recovery post-surgery. Even as Ry came out of the OR, her liver had shrunk down in size and her labs are showing that it's much happier. The pressures in her heart are improved, her lips are pink (not blue), her sats are in the 80s and she's not near as puffy. Although we will still experience a bit of post-surgery swelling, she looks so much better than prior to surgery. That is the reason I haven't posted any pics of her lately. The poor thing could barely open her eyes because she was so puffy on Thursday.

Here's a bit of a medical report for you all...

Her VAD is operating appropriately and her organs are happier. The surgeons commented on the size and function of her heart. It is so large that she can receive a heart from a donor that is 2.5 times her body weight. It is also completely globular, it no longer is the shape of a "heart." There were a few times during the surgery that her heart just wanted to give up, but the surgery team says it is expected and that she responded well with their efforts.

So here's where she stands. They have not begun the anti-coagulation, but will tomorrow. (FYI: Anti-Coagulants = substance that stops coagulation or keeps your blood from clotting. This word comes up in nearly every sentence when talking about the VAD. This is why bleeding is such and issue. She will be VERY anti-coagulated while on the device.) This leads to bleeding. Bleeding leads to blood transfusions. Blood transfusions lead to introduction to more protiens which raise her antibodies. This can raise her PRA numbers significantly. If you remember back when we were being evaluated for the transplant, PRAs play a very important role in determining which heart Ry is compatable with. The higher the PRA, the much less number of matches. In most transplant candidates, Doctors do all they can to keep from transfusing any blood because it has such a serious consequence. In this case, we will not have that luxury. This is why there is such urgency to get her off the VAD and into the OR for a transplant.

Here are a couple of pics I wanted to share. The first is a picture of the device. It has two large canulas, one for inflow and one for outflow which are placed in her lower chest, just under her rib cage. The blood pumps through the device through pnuematic pressure from the mechanism in the second picture. This is called the driving unit. It has a pnuematic pump and a computer. I don't think we're ready to post pics of the device on Ry just yet. But with time we'll share some pictures so ya'll can understand how the device looks and feels for her.

The Berlin Heart (Ventricular Assist Device)

The Driving Unit

Gilly and I tried to rest in preparation for today. We have been told that it will be very difficult for Ry to come out of sedation. They are managing her pain, but she is intubated and won't be happy about the tube down her throat. In addition, she has ALOT of new hardware and will be apprehensive about it all. The worst part is that I can't scoop her up and hold her in my arms. On the flip side, we have warned our poor nurse today of Rylynn's super sassy and demanding attitude. I have a feeling there is going to be a battle in Room 8 today and I've never known Ry to give in! :) I just hope fiesty little Ry is in there somewhere.


Thank you so much for all of your prayers and support. God is listening. Please continue to pray for Ry. We love her with all of our being.