She's Asleep in the Hotel

3:34PM Wednesday - Liza is now sleeping in the hotel bed, hopefully soundly. I arrived at the hospital just before 10AM because I wanted to clean up the hotel room for her arrival. Plus, the visitor check-in line was very long, so I had to employ my experience of the hospital layout and maneuver myself to the third floor and check in at a secondary location. Totally legal. 

Nurse Linda, our previous friendly nurse, was with us today and it turned out to be a massive blessing. She arranged everything for Liza's discharge, got a phone call with Dr. Louy, arranged the hospital pharmacy to fill all Liza's prescriptions, explained a lot of things to us that didn't make sense before and was generally a kind and helpful face to usher us out. 

Liza was wheeled out in a wheelchair a little after 1:30, generally in good spirits. Laura, the hospital transporter that pushed the wheelchair as I ran ahead with the baggage to get the car, commented on our marriage and love for each other simply from a short interaction. It was a beautiful little blessing for Liza on the way out.

It was a quick trip to the hotel and I tried to get Liza settled in bed as soon and as smoothly as possible. I organized her meds and reread through all the instructions and timing that Linda helped me organize. I wrote a schedule in dry erase marker on the shower door, filled Liza's drinker with water and gave her the ones scheduled at that time. Her eyes were again heavy and I encouraged her to sleep. I took the opportunity to run to the grocery store down the street and get some essentials. 

However, the reality of things weighs heavily on her and me today. The transition was actually quite emotional and a bit scary for her. Here are the unfortunately true facts that we discussed together this morning: 

Liza is no different today than she was when we arrived here in CA.
We both expected some major improvement when we arrived on August 16 - we were praying for total healing.
Her headache pain and pressure is still crushing and positional. 
Everything points to a CSF leak that we cannot yet find. 
Two docs here said that Liza still has a leak.
Her continuing pain is being masked and managed by medications.
She does not want to be on medications. 
But she also does not want to continue with this great pain. 
We will not stop investigating other options when we get back.
This is very frustrating and can be emotionally and mentally heavy.
Not much happened here when we look back - except that we experienced great care, some collaborative and interdisciplinary exposure, and we learned some things by ticking them off (no connective tissue disorders, etc.). 
We continue to hold on to hope. 
We still believe God is good and that He is Healer. 

Our current plan and agenda is to stay here for two nights just to settle a bit in a real bed before the flight home on Friday afternoon. This will get Liza back to our two precious kids - pets - home - etc. - on Friday evening. We are still praying for the stay here and transition there. 

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