I'll apologize from the very beginning...this post will be scattered and unorganized. I'm just going to unload my brain.
Saturday must be my designated "hard day", because I am feeling really sad again. How is it that you can miss someone so deeply, while being only inches away from them? I want her back in the worst way. It is a desperation I have never felt before.
I spent the night with her last night. It just works better for me to go in after my kids are in bed, so I got there around 10:30. When I got there, they were cleaning her up. George called me over and said for me to pay attention to how they were doing it, because he didn't feel they were doing a good job. For one, they took her foley catheter out, because the doctors apparently thought it was giving her a urinary tract infection. I don't doubt that, but she is nowhere near ready to tell us when she needs to use the bathroom, so now, after only a day or so of the catheter being out, her skin is completely raw. I stood at the head of her bed while two staff people were getting her situated. The look of pain and desperation in her eyes will likely forever haunt me. She doesn't really have the mental capacity right now to tell them to stop or that they were hurting her...instead, she just gets this really pitiful look on her face. I told them she needed to have another catheter to allow for her skin to heal, so the nurse got it ordered.
The rest of her night, she had her eyes closed, but she was extremely restless. Her hair is completely matted now, even though we tried super hard to keep that from happening, so I can only imagine how much her scalp itches and the hair is pulling. She also scratches at her face a lot and her legs are constantly on the move. I would rub her, talk to her, straighten her out, attempt to brush her hair, and just be right by her, but nothing helped. Around 4 or 5 AM, she finally fell into a deep sleep.
At 7:30, my mom got there, so we just sat on the empty bed next to her talking. At around 8, one of her primary doctors came in (not a specialist...just a general medical doctor) and was very quick. I hate feeling rushed. I asked if we could maybe start to try to transfer Leslie to a chair a few times a day to get her out of the bed. She said no, her heart was too unstable to put any type of exertion on her. That was sad for me.
The nurse and nursing assistant came in at around 8:30 to wash her up then I got to feed her breakfast. It was nice to be able to actively care for her. I have been longing to do SOMETHING for her ever since this happened, so I really get a sense of fulfillment from that.
At around 9:30, a cardiologist came in and really broke my spirit. The first thing he did was stare at the bed and my belongings, then say in a really surprised tone "you guys aren't staying the night, are you?" We told him we were, that she wasn't ready to be alone since she couldn't ask for help if she needed it.
Then he told us we would have some difficult decisions to make this coming week. We already knew they wanted to do an MRI of her heart and a cardiac cath, so the procedures weren't a surprise, but he implied she would have to make more improvements neurologically before we could do any of this. That didn't make any sense to me, because we have learned that it could take months to years before we have her back mentally, if at all. When I tried to get him to elaborate on what he meant, he said something along the lines of "the chances of her even surviving the initial incident was less than 10%. You realize that, right?" No, genius. I had no clue that if your heart stopped, there was a good chance of death. It was like he was saying we needed to just be thankful she was still with us, and stop asking for anything more.
He also said her heart has gone into some sporadic irregular rhythms, but clearly nothing that has hurt her. He said another option may be to put some type of vest on her that has an external defibrillator in it, and send her to rehab to recover more mentally, and then going through with the other procedures. And of course, he also had to remind us that she still could die before we do anything. And then he left! It was awful.
My mom and I talked a bit more and decided that before we made any big decisions, we wanted to sit down with the cardiologist and neurologist and get everyone on the same page. I just hope the doctors agree to this.
I feel like all along I have had a very realistic idea of what was going on. I think, if anything, I have been really pessimistic about all of this. I haven't let my hopes get too high about ANYTHING. Then this doctor comes in and knocks me down even further than I already have been, and it hurts.
Prayers are needed more than ever. We cannot lose her.