01.14.2023
Day 9
Now that Leila is starting to ever so slightly recover from the yucks, I'm able to reflect and enjoy some of the humor from the past few days.
Here is a text I saw from Leila when I woke up this morning. She had sent it at 2:28 am. (Who can make any sense at that hour of the morning):
"we need ti dhoe these i. Another bag of plrelardm since I'm bleeding sign. In the nose again."
Was I supposed to understand that?
She's so precious when she's tired.
My guess is she was trying to dictate the text but google didn't understand due to her incredibly dry mouth. It's so dry her tongue sticks to the roof of her mouth and her lips get glued together. Not sure what's been causing it, but it's been bad for days. No matter how much she drinks, what she drinks, or how often she uses the spray they've given, nothing seems to give her much relief. She sounds kinda drunk when she talks. Fortunately, she doesn't get mad at me when I giggle.
Add to that the hallucinations she's been having due to one of the medications for nausea and it's been quite the show. She drifts in and out of sleep, talking all the while. I'm never quite sure if she's awake and talking to me or asleep and talking in her dreams. She says dreams are very vivid. All kinds of crazy talk, but none of it makes sense because of the dry mouth. Her legs run, her hands grab at things and she reaches for things that aren't there - mumbling all the time.
Sometimes I ask her a question, thinking she's talking to me, and wake her up. When she's awake and I constantly ask her to repeat things, she thinks I'm going deaf. Maybe I am, but trying to understand what she is saying would be a challenge for the very best linguists.
We've had a lot of fun laughing about this today, so she is clearly feeling less miserable. She's also been awake more and sitting up out of the bed. She was even up for playing a few hands of rummy. Yay! That's when her cognitive impairment made a grand appearance. She had trouble shuffling the cards, counting when dealing and holding the cards in her hand. She was a good sport about it all and I'm proud of her for trying. She even won a hand!
Things seem to be shifting and the doctor mentioned discharge to home likely mid week. Leila's ready to get out of there and get home to some peace and quiet. That's always a good sign. Another sign of recovery is that I'm starting to get her nerves - just the tiniest bit. There is a delicate balance being a caregiver, between being helpful and being obnoxious. I think I'm doing ok. If I lean too far one way, she lets me know, then I can calibrate. I love that we can communicate openly about these things. It makes it so much easier than trying to predict or guess what the other needs. I'm not a very good mind reader.
Hi Leila & Kristen…thank you so much for including me in your blog. It brings back so many memories of everything I went through with my SCT in Jan 2017! You are doing great and I am praying hard that you can be discharged mid-week!! Stay the course, be strong and know that there is an end in sight…it will be so nice to get home!!
ReplyDeleteBy the way, you made reference to the permanent catheter, even though it is temporary. They called mine a tri-lumen catheter, meaning it had three lines. One line was used for all the blood work needed, the second one was used for the stem cell, apheresis, and the third line was used to transplant the healthy cells back into your body. I lovingly called mine Huey, Louie & Dewey!! When you go home, they should remove the catheter. Take care!! Peggy
Sounds like things are going as they should. Sending continued prayers and love and hope for her to go home soon! We love you all!
ReplyDeleteThanks so much for keeping us apprised. Fingers and eyes crossed that you get out of Dodge mid-week, Leila! Hugs and lots of love to you both!!💕
ReplyDelete