Today Hana’s chest X-ray looked the same and when they listened to her breathing they thought they heard less breath sounds than yesterday. This is a bit discouraging to me but I suppose it could still take weeks to get her lung expanded. Some of that will depend of how quickly her enlarged heart can decrease in size. It could be that her left lung has been collapsed so long that it will not fill back up with air. Hopefully not.
Hana is doing well today. She has had moments where she is very alert and awake, yet calm. She likes to stretch her arm above her head. They turned off her epinephrine, increased her feeds to 5mL/hour and they took out one of her chest tubes. Her Heparin therapy is going well. They did have to increase her Nitroprusside because her blood pressure has been too high. They are also having a hard time keeping up with all her electrolytes because of all the diuretics Hana is getting.
Today they got Hana’s antibodies blood work back. Hana has type A blood. It turns out she has lots of antibodies to type B blood so she would not be able to accept a heart from a type B donor.her HLA antibodies came back pretty high. They will test her again in a few weeks because this can be high due to a number of things Hana has had done recently. If her numbers don’t com down then she will have to start a medication to suppress the antibodies. This made me nervous and even feel lightheaded.
We had to take down all the decorations in Hana’s room because they moved her down the hall. We are going to hang up a green paper cut out Christmas tree to tape on the wall. Hopefully we can get some “ornaments” to tape to it as well.
We are all feeling a lot more relieved since Hana’s Berlin Heart surgery. Her vital signs look a lot more normal. This is so reassuring from Monday before surgery when I saw her heart rate drop to 60.
Hana is still doing great in recovery. Her X-ray still looks the same but all the doctors, NPs and nurses that listen to her say they hear a lot more aeration in her left lung. Today they did an echocardiogram and they feel that her right ventricle is still working pretty hard so they don’t want to go down on the epinephrine yet. She is still on all the same meds. Today they started her Heparin therapy which helps to prevent blood clots which is the biggest risk/side effect of the Berlin Heart. They also started her feeds although only 2 mL/hour which I guess is just to activate her gut. In think they need to come down on the epinephrine before they increase feeds.
I got to watch them change the dressing on her surgery site today. I saw the staples up her chest which were the strangest looking because the skin is raised. I also saw where the chest tubes and the cannulas are coming out of her body. Eventually I will have to help ace bandage up the area to keep everything secure.
Hana was in and out of wakefulness today. She seemed less agitated than yesterday. Although she seems more frustrated, maybe because she is more aware. She seems to want to stretch. Her nurses have been great and she often has two nurses. One nurse will train the second nurse for four hours on the Berlin Heart. I hope four hours is enough training. One interesting thing is they have to send blood work to a special lab. A runner comes up and waits by the bed while the nurse draws the blood. Then the runner goes and takes it immediately to a lab a few miles away.
As for the rest of us, Paul is getting work done as is my dad. I’m trying to get logistical things settled – canceling cable and appointments and getting forms submitted. I think by tomorrow Hana will be awake enough where we will need to be by her bedside more. We are all looking forward to this! Today we did spend time hanging up some of the cards she has received. Hopefully we don’t have to change rooms until we get to go upstairs!
Lots of people, many of them doctors, stopped to say how great Hana was doing. It feels good to hear this. Hana has been quiet and occasionally awake for a few moments. It does seem like being in her room too much kind of wakes her up or agitates her yet, you want to be there to comfort her when she does wake. It’s hard to find a balance.
I’m slowly learning more and more about the new world of the Berlin Heart. I know I said I would share more details but I am so exhausted and I think the past three weeks are catching up to me. I will share some pictures that I and others have taken.
The Berlin Heart is an external pump. They check it at least every hour using a flashlight and a mirror (for the underneath part) for any clots that may form. A clot could cause a stroke.
Hana has a lot going in and out of her body. Besides her breathing tube, she has some kind of NG tube for venting her stomach, 2 IVs, 2 arterial lines, a PICC line, a central line in her neck, a Foley catheter, 3 chest tubes and 2 cannulas for the Berlin Heart. All of these will go away, eventually, except the Berlin heart cannulas and she will probably keep her NG feeding tube until after transplant.
The red thing in the picture is the pump and it is red because that is Hana’s blood in it! It’s pretty amazing to see.
Sorry for the delay in posting an update. Hana is doing really well. She is still very sedated, although she does open her eyes from time to time and looks like she is in some pain. Today they will start her back on diuretics to try to get some fluid off of her. This will help her left lung but will also help her right ventricle so it doesn’t have to work so hard. One of the heart failure/transplant physicians reviewed the details of the Berlin Heart and how it functions with the CVICU staff. They always keep a back up device plugged in just outside her room. I will send more details and pictures soon.
Hana is back in her room in the CVICU. The doctors and nurses are still settling her in but we did go into her room for a little while. It’s a little hard to see the thumping of her chest, which looks mechanical. For me that feels the hardest – not the three chest tubes and this pump holding her blood that comes out of her chest. Hana is doing well.
The surgeon talked to us after the surgery. He said things went well. Her heart has already reduced in size. They tried to reinflate her left lung but they were not able to. This was not really surprising since her left lung has been collapsed for so long.
While Hana was in surgery they put in a larger (diameter) breathing tube. They put in a central line in her neck and another arterial line in the groin area. They pulled her NG tube. Hana is on a lot of medications they added epinephrine, nipride, and a few others, she is getting Nitric oxide and a blood transfusion. Her blood pressure is a little high. It will take some tinkering to get everything just right. The biggest concern is to just watch the right side of the heart – to make sure it doesn’t get overworked and to watch her bleeding.
I am relieved the surgery is over. I wish there were less concerns right now because I am exhausted and would love to sleep. Actually they said tonight would be a good night to get sleep, while Hana is still very sedated. They always say stuff like that. I didn’t listen much to that advice the last time, in February, I just thought they were crazy and just didn’t understand what it was like to go through something like this. And probably they don’t know, but they have witnessed a lot of people go through it. They were right. As Hana’s heart failure/transplant cardiologist said to me Friday, “This is not a sprint, it’s a marathon.”
When I went in next to Hana, I put my hand on her head and stood in awe. I told her she was amazing. It is amazing to me how much she has gone through, I don’t even know how to put it into words.
They are almost done! So far things have gone very well. They only had to implant one pump. The surgeon will be out to talk with us in about an hour.
They will update us every two hours. The first update is that everything is going fine. That’s it! In the meantime, Paul is doing work and I’m trying to cancel or put a hold on memberships and subscriptions at home. We are also checking the blog comments and Facebook comments and messages – they really help us! Thank you all!
And now it begins…
They said, “5-6 hours, at least.”
We kissed her. Now we wait in the OR waiting area which is packed there is nowhere to sit but outside. We will get updates every two hours and 45 minutes before they are done.
They keep saying Hana will go down to the OR soon but no one really knows how long that is. The surgeon stopped by at 2:40 and said “in the next hour”. I think we are all getting a bit fidgety! Well, except Hana who seems to be waiting patiently! I will post an update when she goes down. The surgery will take 3-5 hours.
The first case will be done around 1:30 so Hana will go down between 2 and 3pm. She is doing well. The waiting is hard. Hana is such a trooper!