Berlin Heart

When I got here this morning they told me that her chest x-ray looked like her lungs were either collapsed, or that there was some fluid pressing down on them. Dr. K decided to do a wash out of her chest this afternoon. So the whole team (Dr. K, anesthesiologist, Nurse Practitioner, and LOTS of tech's) were back at it. The procedure took about 30-40 minutes. Dr. K said everything went well. They got a chest x-ray afterwards and everything looks good again so the wash out did the trick. Dr. K turned down the ECMO a little bit while he was doing the wash out and he said the heart (including the left ventricle) did a little bit of work but not enough to sustain itself. The heart is just not strong enough and when they say that they don't think the heart will recover, this is what they are talking about. It can still beat just a little and not be 'recovered'.

Before that procedure they started to come down on the amount of paralytic drug that they are giving her. She was moving around more and was more alert. She started to open her eyes.....the first time since surgery. She had cracked her eyes open a little bit and then I said her name and she opened her eyes as big as she could with her little eyelids being swollen. I just talked to her and she looked at me. I couldn't help but cry a little, I told her that she was the bravest girl I know and that I loved her. I knew she knew I was there. I don't think she could see me very well because they put a fair amount of lubricant on her eyes, but she knew my voice. My heart ached for her.

The big news of the day is that Dr. K came and told us they are recommending a VAD (the Berlin Heart) for her. This is literally a last ditch effort to save her life so we are going ahead with it. She will not survive on ECMO long term. It sounds like the opinions of the heart team were about 50-50 on the VAD issue. But the fact of the matter is.........Gracie will not make it, waiting for a heart on ECMO. If they get a heart before the VAD, they will still take it.

The procedure to put the Berlin Heart in is quite extensive and is very high risk. They know she may not survive the surgery or recover from it but it is her only hope at this point. They have only done the Berlin Heart TWICE before. One patient lived, one patient died. It is not FDA approved but they have been using it in the United States for 9 years. From what I have read on the internet the doctors around the country are pretty frustrated that it is not FDA approved yet. They have to order it from GERMANY and the whole Berlin Heart team comes in from out of the country (I think Canada) to assist with anything Dr. K needs during the procedure!!! We have been joking that Gracie is a drama queen and that she really does not need to go to these extremes to get attention! We will give her PLENTY if she would just stop the drama!

Now, there is a possibility they will not put the Berlin Heart in even when they get it. Gracie has to be stable and looking pretty good or they will not go forward with it. They are hoping to do it on Tuesday or Wednesday. It should be about a 6 hour surgery.

Here's the kicker. If Gracie survives the whole VAD surgery, they will take her OFF the transplant list until she fully recovers. Which they anticipate to be 4-6 weeks!! YEOUCH! At the time they deem her 'fully recovered', they will re-list her and the wait will begin, then of course after re-transplant she will have a 4-6 week recovery. I almost can't think about that right now. We will just have to take one day at a time.

Once they recover from the VAD surgery. They expect her to be extubated and back to 'normal' where you can hold her and it would be similar to how she was before this transplant.

So, this is a lot of information to digest. I said to a friend several days ago (after we heard Gracie was going to have to wait for a heart in the hospital). "Besides death, how could this get any worse?" Well, let's just say that I am eating my words now.

The day is almost over and there are three people at the bedside trying to control the bleeding from the cut down art line on her left wrist. It is hard to watch. Gracie keeps everybody on their toes.

Thanks for praying everybody........we feel lifted up by your prayers and support.