MICHAEL & PATRICIA IN NEW YORK'S CENTRAL PARK, WHEN THEY RECEIVED THEIR BOOK AWARD-----------------------------------------------------
Today, for the first time since we entered the hospital on December 22nd, I felt I had my sweetheart back with me.
Though still exhausted, today Michael was more grounded, more clear-headed, more conversational. He was more my Mr. B.
Unfortunately, with that restored lucidity came a heightened awareness of his condition.
Curiously, I asked him if he remembered getting sick in Ojai. No.
Coming with me to the hospital? No.
Being intubated and on a ventilator. No. (Thank God!)
Having the trach? A bit.
Communicating with sign language before the trach was plugged? A little.
Imagine waking up one day having lost a month of your life, and finding yourself in a weak, debilitated body that was too thin, being fed by a stomach tube, because you're unable to eat, drink, walk or bathroom yourself, and having difficulty using your left arm and leg? And then imagine everyone telling you how much better you were doing!
It would be weird, wouldn't it? And confusing, and frightening...and depressing.
I spent much of today assuring Michael that he did NOT have cancer, was NOT getting chemo, did NOT need surgery, was, in fact, NO LONGER sick, WOULD leave the Rehab Hospital, and WOULD have his life fully restored.
Although he was accepting and warm with his visitors this week, it apparently felt very odd and contradictory to him when they enthused about how fabulous he looked. Of course, he has no back story in his memory to compare the comment to and it churned him up to be seen the way he is now and then hear them exclaim the opposite of what he was feeling.
The doctor suggested there be a moratorium on visitors for at least a week while Michael gets a chance to process everything. Even family. Bill/Susan, Susie and Karen couldn't have been more understanding - as I know all of you will be who have been looking forward to visiting.
I'd have even stayed away if he'd asked me to. (I think. Maybe. All right - I probably would have had to hide around corners!) Thank goodness he wanted me to stay.
If you want to send more cards or pictures, this is a good time for positive assurances:
Cottage Rehabilitation Hospital
2415 De La Vina Street
Santa Barbara, CA 93102
Room 108
Progress on Day 4: Here's a picture from today of the Occupational Therapist, Doris, working with Michael in the Therapy Room. She's on the bossy side with him, but he needs a little pushing right now. (And they do respect patient's rights here - if Michael refuses to do something because he's not up to it, they respect it and don't make him feel bad about it. They just keep coming back.)
Look! She's really hardly helping with his left arm; he's doing it!
I just wish he could appreciate his progress
more. It seems so slow to him - but I see SO
much improvement already.
When I saw that Michael was more alert today, I asked Doris and the whole staff to work with him on finding and pressing the nurse's button in the bed. I don't like leaving, knowing he can't buzz for help. And he did great!
Tummy Tube Hurting. With Michael's alertness has also come more discomfort from the feeding tube. I body-blocked Dr. Shapiro this afternoon and got him to come in and look at it. It was a little red, but didn't hurt Michael when food went through - which meant it was in the right place and working correctly. The doctor started an anti-biotic just in case an infection was beginning and signed Michael up for an anti-inflammatory pain killer (that he swore wouldn't make him loopy again).
I'm afraid Michael is stuck with that tube for another week or two. They do think he can swallow better from a mechanical standpoint - but he's been SO sleepy, that he hasn't been safe to eat. They don't want to schedule another swallow study too soon, because of the radiation, if they think he won't pass.
If he's as alert tomorrow as today, we might be able to get the study for early next week. If not - mid or late next week. And he'll still need the tube after he starts to eat, because at first he won't be able to eat enough to get all the calories he needs.
Sorry, baby.
This may be a new tough time - but I swear it's still better than life and death in the ICU.
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