The road is bumpy and long

I'm not sure where to begin tonite; I'm all ajumble. Let's start with Kari lovingly french braiding Mily's hair today; easier said than done when a person is bedridden and unable to help. It brings tears to my eyes to picture you sweetly talking to Mily as you work your fingers in her hair - I love you babe - both of you! We've had rough days along the journey thus far; today wasn't rough but it didn't bring us closer to answering our prayers, either. Occupational and physical therapy have started working with Mily; at this point they're just doing range of motion type things. A few posts back, I talked about how Mily had developed a PE (clot) in her lungs and the causes, treatments and such. She has now developed DVT's (deep vein thromboses - fancy term for clot) in both of her legs. The treatment is the same for the PE as it is for the DVT's; over the long term - not likely to be an issue, it's just one more hurdle on the path. She has also begun to have tremors in her right arm - it's a shaking type movement that comes and goes. She is requiring more aggressive blood pressure management, they are making changes to her meds to find the best drug. It concerns me more and more every day though that she is not responding much to all the activity and noise going on around her. The ICU environment has so many inherent irritants to a patient and their general sanity. I want for her to be going nuts at all the irritants in that environment and scream at the nurses to leave her alone (or at least sign for them to go away!) - just so we all know she can. Even with medications to relieve pain and decrease anxiety, her level of conciousness should be showing progress. It is not my intention in these posts to increase your anxieties over the situation, but I don't think it's fair to any who care for Mily to not have forthright info. Pray that she's just using this down time for a long overdue soul vacation; pray that I'm an overthinking slightly paranoid neuro nurse who is fearing the worst without cause - whatever it takes ladies and gents.....whatever it takes. I know you all miss her - I am so blessed to be the guardian of your posts and emails to Mily. My faith in the world is renewed when I see this seemingly fragmented group of people unite for a single purpose where the ultimate benefit is not their own.
Bests, B