Today Hana graduated from the CVICU and went back to her old room on 3 West (supposedly now known as Unit 374). Her nurse in the CVICU was in training when Hana was there last time and the nurse who got her on 3 West had also been training when Hana first got here. I guess it goes to show how much time has passed because they are no longer new hires.
I think people really worked hard to get Hana back in her old room. We really appreciate that because I think it has made things less scary for her. Her old room still feel quite different because all the decorations are gone, but there is still a familiarity about it. She has also had two nurses that she has not had before (actually she had the night nurse a long time ago during a previous stay) because they are not trained with the Berlin Heart. I think it has been a scary and confusing time for Hana and the more she is familiar with, the better.
Hana got her central line (the IJ, which was in her neck, not my favorite place for a central line) out once she got her potassium and magnesium. In the middle of the night they started a new IV (I wish they had called me to be with her), I guess her other one was just too leaky. So now she just has one IV, nothing else. They’ve been going down on her oxygen and hopefully she’ll be off it tomorrow. Hana is back to her full feeds of straight breast milk. She is refusing to take anything or much by mouth. So, she continues to have her NG tube.
Hana has been a little bit sweaty with clammy hands and feet, no fever, so they are just watching that.
I’m slowly getting a handle on her meds. Some, she probably won’t be on more than a few more days. She still is getting IV Cefapime antibiotic. She is getting a breathing treatment of amphotericin twice a day while she is in the hospital. She is getting awful Nystatin swabbing of her mouth three times a day. She is getting Lasix and diuril enterally. The rest of her meds she will probably be on for a while (or forever).
She’s doing really well! I can hardly believe that a week ago she was getting her heart transplant. It is surreal. It hits me a few times a day and I can hardly believe it. From the beginning, in February of 2015, to now and now she has a new heart, so much has changed. I feel like a part of me has been removed and replaced too. We will never be the same. Too much has come to pass. It’s kind of like when you become a parent for the first time and suddenly you can never be the same person you were before they were born. You can never unknow what it’s like. All of this has been a lot like that, except much, much more traumatic. All of it hasn’t been traumatic, in fact, I’ve never experienced as much love and support, who knew people could love so well?
But we can.