Meagan is doing pretty well this morning. It's hard to sleep when they are waking you up every two hours to give you pills, an IV infusion or worse to have to tap a new vein to draw blood to check her sodium levels. Her veins are shrunk due to dehydration so it's a painful process if they have to put in a new line. She is very thirsty ("I want water"), but she is water restricted. She hates V-8 and tomato juice. Is tolerating ice cold milk. The goal today is high salt and potassium smoothies I think. We are hopeful she can switch to salt tablets at some point today. They have to bring back to normal her sodium levels slowly. "Cerebral sodium wasting" is a funny term for a bad condition. For some brain surgery patients a few days after your brain just tells the body to dump sodium. That alters the water balance in your body and brain and as a result your brain swells from too much water. Not good. Causes severe headaches and impairs functions up to unconsciousness. Until her body resumes balancing electrolytes and fluids naturally she has to have infusions and testing.
Her aphasia is improving steadily. She's gotten much better at getting the point across even if the words aren't right. But it's still frustrating because sometimes she can't find the right words and we can't guess. And then every once in a while out pops a complete sentence with complex words. The docs are hopeful this condition is not the same as from the surgery but just a reaction to the swelling and that it will improve rapidly. There is no change on her restricted field of vision on right side. When she is looking straight ahead she can't see anything peripherally. We are told likely permanent so coping mechanisms are what she will learn. She also has balance and weakness on right side.
She's regaining her appetite and we are on the road to regaining her lost weight. She's pretty specific about what she does and doesn't like. Mashed potatoes and gravy have been good.
There is sort of a plan. Get her out of ICU (and therefore off IVs). Get her back up to 3rd floor acute care with continued monitoring of sodium Get her to sit in a chair and walk a bit. Get her hydrated. That all might take 2-3 days. Maybe out of ICU this afternoon but probably tomorrow based on bed availability. Then once she's able to leave acute care get her up to the 4th floor for intensive physical and speech therapy. Once they deem her capable she can go home and then continue outpatient therapy.
And then we are back to Kaplan, our oncologist, to fight the melanoma battle.
Riley flew back to Pomona last night. We will skype and talk by phone and text often. He will fly back in ten days for a visit and then go back until graduation May 15. After that he returns home.
Casey is living at home but got work off last week and this week. I sleep over with Meagan and he comes down late morning to be with her (today he plans to read her The Princess Bride). That gives me a break for a few hours. He is outright amazing with his mom. I've had two no sleep nights the last week and overnights in ICU or Acute Care are hardly restful.
I believe she will be able to start seeing visitors once we get her to Acute Care. On a metered basis. Stroke victims (that's what she had - her brain tumor burst and hemorrhaged blood and filled brain cavity) get overstimulated and tire easily. She's working so hard on her language and a lot of mental effort to figure out her situation and remember her long term condition and it's frustrating. But she still laughs and her personality is all there. There are some definite words she is always able to get out when she is frustrated if you get my drift.
And she's sporting a new look! Head is mostly shaved, a bit ragged but we can smooth it out once all her staples are removed. Her hair will grow back and I'm sure she'll want it long enough to cover over the horseshoe sized scar on the back of her head. In the interim she is wearing one of her beautiful wool hats.