two Soren updates (my own to follow)

[coyotegoth]

from roadnotes:

Velma, over at Making Light, had this to say to people who may want to visit:

I am home, and very frazzled, but wanted to post a couple of notes about visiting Soren.

1) Please use either Soren or Scraps when addressing him. He does not like diminutives of either, and right now, they add additional irritation and confusion to him, as well as confusing the hospital staff.

2) He cannot speak clearly, but he is aware of conversations around him, and comprehends a good 95% or better of what's said. He will get annoyed if you tell the same story about him more than once at this point, and he will get more annoyed if you speak about him solely in the third person, instead of including him in the conversation. He's there, even when half-asleep.

3) Soren seems to respond to voices pitched slightly higher than normal in most cases right now. Think Mandy Patinkin, rather than Eamonn Walker.

4) The most common question he asks is, "Where am I?" If he nods when you repeat that to him, for consistency's sake, what we've been saying, moderately slowly is, "You are in New York Methodist Hospital, in the ICU. Today is [Sunday, October 12th]; you had a stroke on Monday, October 6th. The bleeding was on the left side of your brain; this is why you have no voluntary muscle motion on your right side, and very little on the left. You have a feeding tube and cannula in your nose." He may ask that more than once in a short period of time.

5) To make things easier for him, phrase questions as "Yes/no," rather than multiple-choice.

6) As he dozes off, he sometimes tries to remove the catheter. This is a BAD IDEA; you may need to take his hand and suggest he do something else.

Thanks.

from fimbrethil:

Howard and I just got home from seeing Soren and Velma. Soren is relatively stable. Last night he ate applesauce and mashed potatoes. He still can't drink water and is still on the feeding tube. He obviously recognizes people and reacts appropriately to the discussion around him. Some of the facial expressions were priceless. He also is actively removing the headphones when Velma gives him a music selection he doesn't want. He was pretty sleepy today but tried to speak a few times while we were there. The nurse did say he managed to say a profanity quite clearly this afternoon. Otherwise, his inability to speak is frustrating him and continuing to make him cranky. Velma now has blank flash cards in addition to the two communication boards that were made for him.

Soren's mother and sister arrived this evening. They will be staying until Tuesday. Soren responded to their arrival with big smiles. When they got to the hospital, Howard and I took this as an opportunity to spirit Velma away from the hospital and feed her.

Velma still could use energy bars and either Vitamin Water or Smart Water if people come to visit. She's wearing down so if people come and they can afford to take her to lunch or dinner, that will help recharge her. Getting her away from the hospital for even a little while is a good thing.

The hospital staff is still calling him Thomas. He now has a sign on his door which says "My name is Soren, My nickname is Scraps, Only my mother calls me Tommy". Hopefully that will help.

Comments

[bibliofile.livejournal.com]

Thanks for reposting all of these -- especially as only you & Velma & Vicki are on my F-list. I'm not reading much LJ, but I am reading you three.

[feyandstrange.livejournal.com]

When a dear friend was hospitalized with a heart attack, our employer handed his boss/roommate/best friend the corporate Meals on Wheels/Takeout Taxi card and said "Use it. Or HR will come and nag you." This enabled her, and heart attack boy's parents, to get some decent meals (and some variety to them) without having to actually leave the hospital. (Sometimes that's just more trouble than it's worth to tired stressed people.) Plus it's a great way to sneak treat food to the hospitalized person. One can also order to (say) his parents' hotel room.

If Velma has a favorite masseuse, acupuncturist, or similar spa indulgence, someone should make her go visit them.

Since Soren is a singer, I fully expect he will regain the full swallow reflex in no time. If anyone is wondering about why he can have applesauce but not liquids, the deal is this: when one's swallow reflex is weak, sometimes liquids can "dribble" into the lungs. Since the last thing anyone wants is pneumonia, he'll get his liquids through a needle for a while.

[coyotegoth.livejournal.com]

Ahh, thank you; I'd been wondering about that. Will suggest MoW option to Velma.