So I skipped the arm and leg exercises with Leslie this morning. Why, you ask? Because she literally will. not. stop. moving. She is extremely restless. She pulled off her heart monitors twice and she ALMOST got her NG tube and IV out, but I caught her before she could, and her legs are everywhere except on the bed.
No doctors came in while I was there (is this not always the case?) but the nurse updated me a bit. She said Leslie is receiving aggressive heparin therapy (I'm not sure what makes it aggressive...it's running at a normal rate and they are following the same protocol we follow at Wyandotte, but whatever) because the pulmonologist is almost certain she has clots in her lungs even though the test wasn't definite. Of course, I never heard a word from the neurologist, the one doctor I want to talk to more than anyone. I noticed some swelling by her left ear that I made sure to point out to the nurse, but I really wanted to make sure the doctor saw.
She is still running an occasional low grade temperature, and her heart rate is still slightly elevated, so they took a urine sample and some blood cultures to see if their is an infection anywhere. There is also some blood in her urine that they are watching. The were doing another EEG when I left. They weren't certain they would be able to do it because she was so wiggly, but they were trying. It also sounds like the MRI will be happening. The nurse was trying to clarify the order with the neurologist because it wasn't clear (no big shocker there...).
Leslie was VERY awake while I was there. She dozed off a few times, but it never lasted more than a few minutes. She would also talk, but none of it made much sense. Some of the time she would ramble on and on in a mumbled, garbled mess. Other times it was clear as day. She said "Hi, mom" to me. I corrected her and said I was Laura. Then the nurse came in to straighten her up and she said "Hi, mom" to her, too. Think she wants her mom??
Whenever I asked her a question, she never answered, but she did repeat me sometimes. It was weird, because 99% of the time, she wouldn't answer appropriately or not respond at all, but then there was that 1% of the time where she WOULD answer the right way, or the way in which she would respond made me think that I triggered something familiar to her. Like, for instance, I said to her "I need you to get better so we can go to Olive Garden." Her response was a very excited "Olive Garden!" Olive Garden was always our place to go. When the nurses all came in to straighten her up, she said "This is so weird." Yes, Les, it is super weird.
Who knows what is going on inside that head of hers right now. It saddens me to think that this might be her new baseline. When I start thinking that way, though, I shake my head and tell myself to snap out of it. If you think about it, today she is more awake and talkative than yesterday. Yesterday she was a little more awake than the day before. We are making progress and I absolutely will NOT accept this is her baseline this soon in the game.
We take things day to day. Sometimes it's more like minute to minute. When I stay focused, I feel really determined. When I start to look to the future, I feel really overwhelmed. She has such a long road ahead of her, but she has a great support system and we will get her through this.