Life after stroke - morning of day 4

Last night I had a really good session with Mark! I made him work his brain, as Dr. Kendra said we should, and practiced saying yes and no with his nonverbals. He did excellent! The only thing I will say is that he was very inconsistent about what he wanted to do for yes. Maybe this proves that he doesn't understand every command or maybe it shows that he can't always get his body to do what he wants, I'm not sure.

Because I felt like he really understood what I was saying, I talked to him about the feeding tube situation. I gave him all the information that has been given to us and explained that we would really like to know what he wants to do. I asked him several times if he wants the surgery for the feeding tube. As adamantly as someone can say something with their nonverbals, Mark said, "Hell yes I want a feeding tube!" After a few more questions, he just as adamantly said to me, "Hell yes I want you to leave me alone now!" So I did.

Mark didn't sleep very well last night (and of course either did I). He gets more and more phlegm each day and it's difficult for him to cough it up and swallow it. I think that was part of the reason he didn't sleep well. I think another part was that he was in pain a few times before he was able to get more pain medicine. At 5:30 he wanted more pain medicine (again, if our nonverbal system is working well) but the nurse said he couldn't have anymore until 7:15 (which he did get and seems more comfortable).

The final reason I don't think he slept well is because he wants food. I only came to this conclusion by process of elimination when I couldn't figure out what he wanted and he didn't raise his hand until I said hungry/food. It's really difficult for me when he tells me he wants food because I can't just push a button for the nurse and get him food like I can with everything else. There's absolutely nothing I can do but tell him that we're trying to get it moving in that direction!

Mom found his living will at home this morning (thank God!) since the hospital kept trying to tell us it didn't exist and they kept saying they have no proof that Mark and my mom are even married. Having a copy of the living will is great news so that we don't run into any power of attorney issues if he can't physically indicate to the doctors that he wants the surgery (although we've been working on it a lot and I think he would be able to on his own).

A doctor should be in to see him within the next hour. Thanks to so many of your suggestions, I definitely plan to ask the doctor about the option of him getting nutrients through the IV. Not sure why a TPN was never mentioned to us, but thanks to you sharing your experiences with me, I now know this could be an option and I plan to ask them for it! At 9:00 a.m. he goes down for a Barium Swallow Test, getting us one step closer to getting the feeding tube situation figured out.

It isn't likely that he would have the surgery today, although if we have any say in it we will push for it, like we know he would. It will more than likely be tomorrow. In the meantime, I would love it if he could get some nutrients through the IV and build some strength for the surgery. I act like I know what I'm talking about, but please know that I really don't. I have no idea if TPN is an option for Mark, if it would even make a difference to give him more strength, etc. But I would rather ask and have a doctor explain to me why not than never ask at all.

Since there's so much going on today, I will try to write several updates to make sure and keep you all in the loop. Thank goodness for the free and easy to access Wifi at the James!

I hope you know how much your support means to all of us. We appreciate the prayers and they must be working because I was terrified to spend the night alone here again last night, but somehow we are all finding strength we didn't know we had!