Rehab Saturday Day 6

(Top) HAPPY GRAN WITH ONE BIG 4-MONTH OLD!
(Bottom) GRAN, LIAM, PAPA MIKE AND MAMA NICOLE IN A REAL RESTAURANT IN SANTA BARBARA.
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I was away a bit today as my son, daughter-in-law and grandson (Yay!) came up to have lunch with me. I got to hug, kiss and bounce da baby! He's a big, strong boy!

When I got back, Michael felt better and wanted me to help him do his nails and buzz down his beard, which he said was scratchy. (Sorry, beard fans - his days of looking like George Bernard Shaw are over.) Then he wanted to lie down before I finished! I got him to let me even it out and we'll clean it up tomorrow. He looks younger without the beard.

We're still fighting nausea. Michael threw up this morning, even tho we changed the antibiotic Keflex to Cipro. The nurse Rocky thought it might have been because they gave it to him with a pain med and both given together are more likely to do that.

We made sure the doctor's assistant put it in writing into the orders NOT to give the two near each other (Norco pain med is only as needed) and to always wait between the two cans of food to make sure he'll tolerate the quantity.

Was thrilled to see Michael roll the wheelchair himself down the hallway, working with the therapist. Boy, is the hospital in trouble once he gets the hang of it, right Leslie? (Tho with that weaker left hand, he does tend to veer right...but when he's facing a wall, that's how he'll know to correct it.)

He's complaining a lot about the staff, but I have to say it's not valid most of the time. He's hit a period where he's resentful he's here and keeps asking me if he I can take him back with me to the hotel or home.

I always tell him his situation - and that Wed at 8:30 is the swallow test and after that, maybe he can start eating and once he can eat enough calories, they'll remove the tummy tube. Then we can talk about an overnight at the hotel.

And he's already using the urine bottle and toilet or bed pan almost every time. He's also standing perfectly and sitting up straight. He's really come a long way in a week, despite the sleepiness and nausea. It's just hard for him to accept how much good this place is doing him.

Tomorrow: No therapy - all rest.

Closing Note: When I left last night at 11 pm, I gave him his cell phone and we went over pushing #2 for speed dialing me. He found it confusing - but - 30 minutes after I'd dozed off, my phone rang with his signature ringtone (Etta James "At Last"), and I awoke to a shot of adrenalin and confusion. That song! His ring! I hadn't heard it for over a month. It wrenched my heart to hear it again..with love...and fear. Was something wrong?

It was him. He'd figured out the phone. "Sweetie, can you come get me?"

I sighed. "No, honey. Not tonight."

"Okay." He hung up.

Broke my heart.

Bits of Progress Cloaked in Nausea

I LIKE THIS PICTURE I TOOK OF MICHAEL ON HIS PATH - LITERAL AND METAPHYSICAL (FROM WHEN WE SPOKE AT ASILOMAR NEAR BIG SUR) --------------------------------------------------------
I got over to Rehab late today - around 11 am - because I had to wait until 10 to hear if I could stay another night at the little Cottage. Nope - which was actually fine with me, as I will be trading a very low rate for (I hope) a better mattress a real pillow, and a refrigerator and microwave.

I signed six books for each of the little cottages and they were enthusiastically received. Then I packed up my multitudes of stuff. Hey, I may not travel light, but I was the only one with a gigantic bath towel (because I brought it) and good coffee in my room (thanks to my little just-in-case 2-4 cup portable coffeemaker)!

Turns out, before I got there, Michael got the place a-buzzin'. The rascal was in the wheelchair when he grabbed a bottle of water off a table. By the time the therapist had turned around, he was drinking it! (I can just hear our friend Leslie saying, "Of course he did!" with a grin on her face.)

The Speech Therapist Elaine said she's not really worried about aspiration any more as much as she is his almost perpetual sleepiness. Well...I think he was pretty alert at the time.

However, when I got to Michael's room, I discovered he was struggling with intense nausea, which had started after they'd given him an antibiotic early that morning for a possible infection in his tummy tube. Typical of the medical mind, they gave him an anti-nausea med to counteract it.

By the end of the day, I'd asked for - and gotten him - a different antibiotic to start tomorrow.

This is why everyone needs an advocate when in a hospital!

In spite of that setback, we had some good new experiences and progress today. We spent a few minutes sitting in the interior patio for the first time, a pretty little place ...I showed Michael the gorgeous stained glass in the little Meditation Room right across the hallway from his room...and the front lobby, where I introduced him to Alice, the friendly receptionist.

I also showed him the dining room and the Swallow Group table, where he'll be sitting with a therapist and others coming off tummy feeds. Next Wednesday is his next Swallow Study- YAY! - so that may be when he begins sitting at that table and interacting with other people here, as well as eating real mush!

Big thanks to Michael's long time friend Alice, who lives in Goleta, for dropping off an airy and beautiful mixed plant. Here's a great story: Alice caught my revised post yesterday about losing my room, and not 5 minutes after it posted on the blog, a nurse handed me a note from her saying I could stay at her house! Talk about voodoo!

And I may take her up on it later - with gratitude - but I need to be closer than 20 minutes away right now. My new motel is two minutes away and I'll barely make it there when I leave tonight!

Sweet Closing Note: The therapists started training me today in the proper way to help Mr. B. from bed to chair and back. So he and I had a lovely moment where he was standing up facing me while I had my arms around him. To be in a standing hug with my sweetheart, our hearts beating close to each other, made me want to just sink into him. He felt like home, and I didn't want to leave.

Sent from my Verizon Wireless BlackBerry

Help! I Need My Pre-Blog Emails to You!

I had to replace my Blackberry the day before we headed to SB (yes, that WAS fun amongst all the other stress) and lost all my email updates that were on it from before the blog.

I wanted to put a "Prequel" on the blog from those emails. Did anyone save them or print them? If so, I'd be so grateful if you would please email them to me at:

Patricia@PatriciaAlexander.com

Got my fingers crossed that one or more of you had pack rat instincts about this...

Thanks.

Love,
Patricia
Sent from my Verizon Wireless BlackBerry

No Visitors For a Bit While Michael Processes

MICHAEL & PATRICIA IN NEW YORK'S CENTRAL PARK, WHEN THEY RECEIVED THEIR BOOK AWARD
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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.

Rehab Day 3: Still Sleepy! And Social!

MY BROTHER RUSS STOPPED BY ON HIS WAY UP TO PASO TO HOUSE-SIT AGAIN...JUST AS OUR BELOVED SBA FRIEND SHARON GARDNER CAME BY FOR A QUICK HELLO. ( Ironically, a reunion for Russ and Sharon, who'd met at the Alan Cohen Mastery Retreat in Sedona a few years back!)
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Doesn't Michael look more like himself in his Michael jacket?

This is actually a rare moment today: Michael with his eyes open. He was one sleepy fella - but Occupational Therapist Doris was just starting to rouse him to take him to the therapy room when Sharon and Russ converged. Michael perked up to greet them instead of sinking back down into his drouse, thus allowing Doris to kidnap him before he changed his mode!

She wheeled Michael away in a flash and - well - I gratefully went out with Russ and Sharon for a nearby bite to eat and schmooze.

WHAT'S MICHAEL WEIGH? Oh, they weighed Michael yesterday in the wheelchair, then weighed the wheelchair without him, then did the math.

He and I bet $5 on the result. Michael thought he weighed 120; I figured he'd come in at 100. No one collected, as it turned out, because he came in at 110. (I was glad to be wrong.) That's about 24 pounds he could ill spare that he's lost since the Swine Flu first hit him. But I want to remind everyone that when he was 28, chemo took him down to 80 lbs - and he survived - so he'll get his fit and trim body back, I know.

The gang here had a team meeting this morning and compared notes on Michael. They all felt he'd need about a month here (that's what I thought, too). And they spoke to me today about the possibility of Michael spending some time at an interim facility after this - a SBA home-like environment of 8-10 people recovering from strokes, who get even more acclimated to going back to normal tasks and their former lives. He may - or may not - need this - too early to know. But not too early to alert the place - called Solutions - and the insurance company, so if it turns out to be a good idea, we're in position for it. (http://www.winwaysrehab.com/index.aspx)

I can tell you this: in spite of all the zzzz time, Michael has visibly done better with left leg and arm movement, with his brain connecting with his need to go to the bathroom, with his understanding of what's going on and what's gone on. If he can stay awake longer and work with the therapist who evaluates his swallowing (called a vocal therapist, though she's so much more than that), we can get him back to eating again. Normal's around the corner, folks - I feel it!

Today, I was showing Nurse Amy the blog on the laptop and how I learned to download photos (though I still can't from my Blackberry, grrr!), and she exclaimed, "Wow! You're so smart! You're brilliant!"

Suddenly, from the pile of blankets and pillows in the bed, came Michael's voice, "She is brilliant. She's always the most stimulating person in the room. I love being with her."

Oh, my God! Did I cry?

I'm still crying.

Day 2 Rehab: 1st Full Day: Michael Too Full (EDITED! LOOK AGAIN - PLUS PIX)

DRESSED, SEAT BELTED AND READY TO ROLL AT REHAB! (See new "Get Well" Wall behind him)
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Michael and I met about 90 people here in the last day and a half - or, at least, it feels that way. All part of our "team," because Rehab is truly a coordinated group effort.

It was rough on Michael yesterday, as he was underfed what with transport, then the doctor having to read Michael's gi-normous file (10x thicker than our book!), then issue new orders for his tummy tube feeding. Add to that, multitudes of people coming by for evaluations and introductions.

Today, his first full day here, he was weak. He rallied for the morning therapies, then tired quickly - and was understandably grumpy, a reaction that's been admirably rare.

(Philosophical Sidebar: It's kind of interesting to see people when they've been stripped of all normal conditions and "rebooted," the way Michael has been. 98% of this whole time, even when he just had his eyebrows and one hand to express himself, Michael's been pleasant, polite, witty, teasing, affectionate, intellectual, philosophical, and even enthusiastic. No wonder we all love him!)

By noon, I had talked with Michael's dietitian and she had willingly increased his calories. One of the differences between ICU and Rehab is that he's not on a continuous slow feeding bag; that won't work with all the physical therapy sessions, plus they want to emulate meals so he can eventually transition to the act of eating a quantity of food at one sitting. We can't wait for that!

So they put TWO cans of liquid food in his "feedbag" at lunch instead of one and our poor boy thought he was "gonna blow at both ends." His body settled down after an hour, but it exhausted him - and the rest of the therapy day was canceled. (We're now trying 1.5 cans, waiting 30 minutes, then ve-r-y slowly giving him the last bit so he can digest and absorb more slowly - and it's working.)

Tomorrow we all think he'll have more energy and they'll space out the therapy so he gets more rest in between. And I gave everyone a book, so they're all super thrilled to be working with the authors. (Hey, every little bit of special attention helps!)

Gratitudes: Big thanks to Michael's dad Bill, who visited today and is generously covering my hotel costs. Along that line, I'm also grateful to Cottage Hospital for giving me someone's cancellation so I could stay in one of six old, but sweet cottages they own a block and a half away, for long distance family. They only charge $25 a night - but they only let you stay for three nights. But it will help, since after that, I know I won't get as good a rate...


And hugs to my dear friend of 35 years and mother-outlaw, Margaret Kerry-Willcox, for her cute note and the gorgeous plant.

Closing Happy Thought: Tonight, Michael got a therapeutic massage and his first shower in probably 40 days (and before, this was a guy who often had two anti-stress showers a day). He looked like melted butter in the bed and completely ready for more healing sleep. Me, too, sweetheart.

WE HIT REHAB!!! (Look Again - I Added Pix)

"I'M READY FOR REHAB!!"
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I don' know if anyone bet against me, but I won my bet: Michael got the big A-OK for rehab and by noon-thirty, away he went, with his trusty sweetie-pie bringing up the rear (and gear) in the Highlander.

I'm Blackberrying this from Michael"s room (108) at Cottage Rehab - but the photo is Michael at the ICU in Templeton wearing clothes for the first time in 33 days and ready to receive the transport ambulance.

Lessons In Bureaucracy: When I'd asked the Rehab liaison if I could sleep in Michael's room, she assured me that would NEVER be allowed...but after I got here, I told the Nursing Mgr., a sympathetic Asian man named George, that I was concerned Michael would wake up the first night scared and disoriented; he promptly invited me to sleep in the empty second bed - which I did, gratefully.

And then he brought me a turkey sandwich and some hot tea, bless him!

Tomorrow, we learn the wild and woolly ways of Rehab.
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I WAS EMAILED THIS ADORABLE PHOTO FROM OUR TENANT/MGR (AND LONG TIME FRIEND) PETER TOBIN IN SANTA CRUZ WITH HIS NEW WIFE XIAONA AND THE BASIL PLANT WE BROUGHT THEM AS A SYMBOLIC GIFT (SPICE IN THEIR MARRIAGE). THEY SAY THE PLANT IS THRIVING AND THEY CALL IT "HEALING BASIL," AS THEY'VE BEEN LIFTING HIM TO HEALING ENERGY EVERY DAY!

Quiet Day - Travel Tomorrow?

This handsome young man is our 4-month old grandson, Liam, sending his "Gran-B" - the name Michael consented to rather that Grandpa or Grandfather - and that Liam almost got right - his best wishes.

I was able to print up the photo at home and tape it to Michael's Get Well Wall after he saw it and reacted with the proper "Awwww!" Michael has only seen Liam once and I have only seen him three times since he was born, but my son Mike and daughter-in-law Nicole have been wonderfully diligent about sending photos to my Blackberry, so I could keep up with Liam's amazing growth. It always lifted my spirits right out of the ICU to see my grandson's picture.

And soon, I'll be able to hold and snuggle him - because it will be so much easier for them to visit from Port Hueneme when we're in Santa Barbara - which is when, you ask?

Could be tomorrow....

Could be Tuesday....

Personally, I'm betting on tomorrow. If so, Michael will be taken in a transport ambulance around noon from Templeton to SBA and I will follow in my car, loaded with our suitcases and essential stuff...like the Get Well Wall - which will travel to his room at Cottage Rehab nicely.

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PICTURE ON RIGHT: I CAUGHT A SWOOPING ANGEL IN THE HOSPITAL PARKING LOT AS I WAS LEAVING.
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Physically, I feel better, not 100%, but human again. I went in and spent the day with Michael, who told me I looked cute in my velour jogging suit - which tells me he's definitely getting less loopy!

We had a quiet day. Michael ably directed me in the best way to shave a guy's neck (hot washcloth to soften the hairs). And he asked to be in the wheelchair to go around the hospital again - and was intensely interested in visiting the coffee cart. (I think he was hoping for coffee and a bagel.) But Jon's not there on Sunday, so I didn't have to explain AGAIN why he still couldn't have real food - except for the 23 other times he asked for some. Poor baby!

I made sure my explanations kept leading us back to our doing the voice box and tongue exercises the therapist left us to strengthen his swallow. Michael was gungho and we practiced several times. I'm sure he'll do better next time we get a swallow study (maybe in SBA).

His white blood cell count was back up to 17.4 - but there's been no fever, and the doctors can not find an infection or solid reason for it. He had two gall bladder tests yesterday, since he has some stones, but there's no infection or sensitivity there. They're running a poop test tonight - and then we're plum out of things to test! His sisters Karen and Susie and I think maybe it's just part of this process of getting well.

Hopefully, the liaison from Cottage Rehab will agree - because it's her call as to whether Michael is ready for transport. Tune in tomorrow, folks!

HERE'S MY BEST FRIEND SHELENEYPOO VISITING US LAST WEEK. SHE'S OVERCOME LUPUS WITH TONS OF COMPLICATIONS, SO SHE ALWAYS TELLS MICHAEL SHE'LL BE HIS HEALING BUDDY. SHE'S ALREADY BEEN OUR PRAYER WARRIOR, AS HAS HER HUBBY CHRIS AND KIDS, TAYLER AND JESSE. (Fuzzy picture is the fault of the photographer. Wait a minute - that's me. Darn!)

White Blood Cell Count DOWN AT LAST!!! (But so is Patricia)

DAD BILL AND SUSAN ON ONE THEIR MANY VISITS TO MICHAEL. If freeway time for all of Michael's family racked up mileage points - from San Diego, Sunland and Camarillo to Templeton and back - they'd all have racked up several free trips to Hawaii!
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This morning - Saturday - I got the best news: the last lingering worrisome problem, Michael's white blood cell count starting to climb again, improved. It went down almost four points from 17.2 to 13.4!


Yesterday was was a day of firsts. As planned, PT got Michael into a wheel chair and he and I went on "a wander" throughout the hospital. He seemed to enjoy it and I got to show him the gift shop and introduce him to Jon, the singing coffee cart guy who's always refusing to let me pay. Then, we just sat a while in front of a great big window, looking into the lovely, large, and slightly wet outside world. (Yes, there IS an outside world!)


Occupational Therapy lady Dianne showed Michael how to use his right hand to brush his teeth, padding the handle to make it easier for him to grip - and he brushed his teeth! (Dipped in mouthwash, since we're not up to toothpaste and spitting yet.)

Remember, Michael is left-handed, but has always been able to play ping-pong right-handed (I know I'm playing well when he switches to his left hand to play me). So I guess he's partially ambidextrous - and about to become more so. He is rapidly gaining back the use of his left hand and leg. But meanwhile, a guy's got to brush his teeth....

Me? I began to feel funny yesterday, told the nurse who advised me wash my hands a lot, don't sneeze on Michael and no tongue kissing. (Okay, she didn't say that.) I kept my distance, dozed a lot on my little cot in the corner and left early, around 7 while Leslie and Rory were visiting.

This is SO annoying!!! I'm a little snasal and feel ucky - so I stayed home today for the first time, much relieved when Susie came up to spend the day with Michael. While it has allowed me to do some laundry and prepare a little for the Santa Barbara journey to rehab (which may be Monday), I'm not happy. But I am napping. I guess the sleep deprivation caught up with me.

Oh - and yesterday Michael repeated the swallow study, always a fascinating thing to watch. Below is the machine they roll into the room and place around Michael's head, sort of a "Honey, I blew up the headset." Next to it is a photo of the screen on another machine that films and plays back his swallow action. Yup, that handsome skeleton you see is our boy! They said one being the lowest on a scale of 1-10, the first study showed his swallow at a 1.5. This one was a 4. So he's getting stronger, but not safe yet to gulp those cherry Coke's he's craving. Sigh! Sorry, honey!

Sticking Around Thru Weekend; White Count Going Up

MICHAEL B.'S VIEW FROM BED OF HIS EXPANDING WALL OF CHEER CARDS, BULLETIN BOARD & IPOD ON TOP OF DIRTY LAUNDRY CART WE USE LIKE A TABLE...
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Keep the Cheer Cards coming from the Twin Cities Community Hospital website - we'll be here until Monday or Tuesday, as Michael needs the time to get stronger.

He had a terrific night's sleep and a really good day, working with all three therapies: physical, occupational - and speech (photo). He sat in a chair for 40 minutes without any side trips to murky unconsciousness. When he began to feel a little nauseous, we knew the time was up, and once back in bed, he felt better quickly and fell into a deep sleep.

It occurred to me that if he could sit in a chair, he could sit in a chair with wheels - so Friday, I'm looking forward to wheeling him through the halls and into the 2nd floor waiting room - just to prove there's life outside ICU Room #1. Might help him orient himself.

He still thinks he's either in a golf course clubhouse or a hotel, which is funny until I have to explain - again - why I can't order him room service. He looks at me with such a pained expression, like he's just being a reasonable guy, asking for a glass of water or orange juice. Today, he declared he wanted some oats! And beer and ice cream have been mentioned with gusto as well.

I hate having to explain that the menu only holds two items: pink swabs dipped in ice water and squeezed dry - and ice chips - which were pretty darn exciting a few days ago, but have lost all allure by now.

His liver numbers are slight elevated, but explainable as a side effect from the antibiotics still leaving his body through his one kidney. But his white count is slowly going up, damn it, and we don't know why. They discovered gallstones in his gall bladder and want to check that out a bit - but it's explained by the lack of normal food. (Is there an organ we haven't examined or had trouble with yet? Mr. Spleen? Mr. Appendix, you're all that's left, I think. Behave yourselves!!!)

I feel like I wish I could kidnap him to a safe place before the doctors find more damn issues. I know it's not their fault, and it's good and cautious to keep an eye on these things, but I'm sick of never being able to let my guard down about his improvement.

DON'T LET UP ON THE PRAYERS - WE'RE NOT OUT OF THE ICU WOODS YET!!!

Not There Yet: Still in the ICU...

HERE'S MICHAEL GETTING A BEARD TRIM YESTERDAY FROM THE LOVELY MICHELLE (TAKE MY WORD FOR HER LOVELINESS) - DON'T WORRY: IT'S JUST A TRIM - HE KEPT THE BEARD!
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So today I learned that when patients are sedated for over a week, they come out of it with sleep deprivation. Go figure! And Michael was sedated and tubed twice. He was also receiving ALL kinds of doggy downers and pain killers - and frankly, not sleeping well. At the time, I couldn't understand it.

But now all he's getting is an occasional Tylenol and/or a Zanax - the antibiotics are leaving his body - and he's starting to get back to his natural functions.

And he's exhausted. The good news is he's sleeping the good sleep - the REM sleep. That's why I feel I can be home right now - I know he's zonked out and breathing beautifully. Bye-bye pneumonia! All gone! (Okay, slight phlegmmy cough left over, but that's it. No oxygen tank for him!)

So I don't why they're surprised that this has put a little damper on his physical therapy progress; I think he's supposed to be weak and sleepy. Today, they were hoping to get him into a chair again. And, he was better at using his own muscles to hold himself up at the edge of the bed. But when the PT people tried to help him stand, Michael's eyes rolled back and whoop! He was out for a few seconds. Left the building, so to speak.

Later he said, "It's a good day for napping." And it was.

I spoke to the Tribune today about the story they're going to do on Michael - and they're aiming for the weekend. I'll see if I can scan it and post it here when it comes out - or at least include a link.

So now we're looking at Friday possibly for Santa Barbara. We'll see...

THANKS FOR THE CARDS!!! YOU'RE FAST! What an Internet world we have - Michael even got Cheer Cards all the way from Germany and New York from Susan Burgos' daughters! (So appreciated, ladies.)

And I'm getting word of all the prayer circles and churches and groups of loving people who are holding Michael (and me) up every day. You all have made a huge difference to us!

The current doctor, Dr. Haddad, said to me today that Michael has healed twice as fast as a man half his age with Swine Flu who was in the ICU, who was obese. His own physical fitness helped save his life - and make a difference in his recovery.

Tomorrow is Day 30.

Trach Out / Moving to Santa Barbara Cottage Rehab!

Mr. B. Watching Basketball From the CHAIR!!
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Whoa! Things are moving fast!!!

Hold those cards and flowers to the hospital - Michael's unplugged (almost) and tomorrow - Thursday - we may be heading to Santa Barbara Cottage Rehab.

The trach came out this morning! All that's left is the stomach peg with the food. They say with the trach out, his swallowing will improve. The hole in his throat should heal up in only a couple of days and the gauze over it still allows him to talk.

Yesterday he sat in a chair for 40 minutes (a big deal) for the first time. At the end, his blood pressure swooped down and he felt nauseous - but they say that's normal for first day in chair.

Gawd, I don't miss the cacophony from hell of those machine alarms and bells! All he's hooked up to now is the food bag. And yes, he's still loopy.

He turned to me the other night, and in a totally normal voice, said, " Wanna split a beer?"

I grinned. "Desperately, my darling, but we're not quite there yet."

More later...

Send Michael and Patricia a free card thru the hospital...

PHYSICAL THERAPY IS FUN!!! MICHAEL LOVES IT WHEN PT COMES. THE HIGH TOP SHOES KEEP HIS FEET FROM GETTING FOOTDROP - & VISITORS ARE SIGNING THEM LIKE A CAST!
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Hi, all!

Sister Karen found this on the Twin Cities Community Hospital site:

http://www.twincitieshospital.com/en-US/CWSApps/CheerCards/Default.aspx?language=en-US

Called "Cheer Cards," they're free color postcards with a message you write online, which they deliver to our room. I'm taping them on the wall after I show them to Michael, and we're starting to create Cheer Card wallpaper!

And if you want to send a real card, of course we welcome that, too, at my name at P.O. Box 1376, Templeton, CA 93446.

We're due to go over to the DOU side sometime today and there we can even have FLOWERS & PLANTS!!! Yay - natural oxygen and something from the outdoors! (I've brought Michael leaves, to prove there is life outside a hospital room.)

And here's a shout out to my fabulous Weight Watcher groups and co-workers: Thanks for all your prayers, healing energy and good wishes sent our way. I miss you and look forward to our life normalizing enough for me to get back to doing what I love and being amongst you. Bill and Ann, I tried to email you back, but Charter insists on referring to me as spam! It was great to run into Flo in the hospital gift shop, where she caught me buying earrings in a moment of lovely distraction and indulgence.

I actually went home last night and slept in my own bed like a normal person, because Michael has the trach plug in full time now. Knowing he could talk and that he was totally stable - and that I was about to bite off someone's head and spit it out at their flailing torso - I thought it would be okay to go home for a bit. I feel SO much better for doing so. I might even let the next mental midget who gets in my way keep on living...

Hugs and Kisses (with no Biting),
Patricia

Help to Comment More Easily

Many of you have said you tried to comment but it was confusing to jump through their hoops. My son Mike made the pictures above to give you some instructions to make it easier.

If you are already a member of Google and have an ID and password, easy/peasy - just follow the sign-in.

If not, but you're willing to be, it will lead you to setup an ID and password.

If you want to skip all that hallaballoo, tick the circle marked NAME/URL.
Then just fill in your name and leave the URL blank. It should let you comment after that.

Thanks, Mike!

ABOUT MR. B.'s THROWING UP AT END OF LAST BLOG

He's sleeping now - they say that since his bowels are moving slowly with the tummy tube feeding (once every 12 hours), even tho he was absorbing the food, his body was too full when given lots of water on top of it. They're going to consider a more pre-digested food and less water more often.

I've asked them to postpone the swallow study from 3 to 3:30 to give him a little more rest time. After that, it would have to be tomorrow. Hate to make him wait - he's been so eager for it - but hate to see him do poorly because he's so weakened by throwing up and have them put him back to pink swabs only for a few more days. Sigh!

Dr. Prier just came in and reminded me that in the big picture, Michael's doing miraculously better.

That smell is back.

Improvements, Visitors (with Pix) & 1 Setback

On top is a picture we emailed to Toby, the son of Michael's good friend and former girlfriend Mica. Toby, who is also like a Godson to Michael, turned 29 or 30 (?) and we wanted to wish him Happy Birthday. Says Toby, "The good news and the picture of Michael are the best birthday present I could ask for!"

On the bottom are our Godkids, Jesse, 12, and sister Tayler, 20, who came with mom Shelene for their first visit. They were SO happy and relieved to see "Da Godfadduh" talking and looking so well.

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Well, we've had a lot of forward motion, with one little setback.

FORWARD: They have been putting a red plug into Michael's trach, which then allows him to talk. First they left it in for two hours twice a day (because it's tiring), yesterday they left it in from 9-6 and today, they may leave it in thru the evening, too.

He's breathing so well, they actually took the Bart Simpson ventilator machine away! (I dubbed it that because when Michael was hooked to it, it would make a sound when he would breathe a certain way that was just like Bart Simpson going "HAH-hah!" in a mocking tone. Jeesh! Add insult to injury!)

But Bart's gone and so is Dennis the Menace, the little blue machine that had the sedation stuff in it - so dubbed for it's mischievous tendency to beep-beep-beep the minute the nurses left the room. (Dennis really got on my last nerve.)

SETBACK: Our setback was from two nights ago. Michael's sodium had been a little high and so they were pushing extra water into his tummy tube with the pasty looking stuff they call food for him right now. Well, somewhere they had miscalculated his absorbtion rate and his poor tummy just overflowed. We both woke up to him retching around 3 am. (This is why I catch a few hours at home during the day when family or friends can be here and come back to stay the night with him.)

He was okay, but it was nasty - and terrifying. We figured out what happened and double verified it by taking an x-ray of his tummy the next day to make sure there wasn't a new problem there - and there wasn't. But he was extra weak and tired all day yesterday, while watching football with Karen & Bob - and I was afraid we'd lost some ground.

I washed and washed my hands, but that silvery tang of the light yellow paste is just now leaving my senses - along with the smell of fear that came with it.

We're on day 27 of this journey and - to use a mixed cinematic metaphor - I feel like the guy in Clockwork Orange being forced to keep my eyes open while I'm being shown one horribly suspenseful movie after another. Michael, on the other hand, is starring in the satire, "The Hospital."

I'm happy to report that he says he doesn't remember much before the trach. Now if I can just arrange for an acid brain drip for myself....

RETURNING TO HIS NATURAL FUNCTIONS.
Today, he woke up stronger after an uneventful night. Whew! And I'm so glad his Dad Bill and wife Susan were visiting today and saw Michael chatty and more restored.

They took out the urine tube! Yay! And yesterday, they took out the PIC line (3 headed blood catheter in his arm and chest). All the bottles and bags hanging from the poles next to him are going away - they stopped the Precedex (anti-pain) and he can good old Zanex on request.

Today they are doing a swallow study, where he'll eat food with barium in it and then they'll x-ray it going down. This will help them determine how aggressively or conservatively to go forward with food and water. (He's "jonesing" for a cherry coke or even a glass of water.)

He had a FABULOUS session with Physical Therapy today! He was able to strengthen and straighten his back with instructions and sit on the edge of the bed without falling over. He showed much improvement on his left side. They even helped him stand up and said he had clearly used his own muscles along with their able help. But -- he sort of forgot to breathe, and once he sat down, he slipped into the gray abyss for a few seconds, signaling the end of what was deemed a very successful session.

AND...Ta Da Da DA!!!! We're leaving the ICU!!! Sometime today or tonight, we'll be going across the hall to a new room in the DOU and leaving the ICU forever (hopefully)!!! They have a bathroom with a shower in it - and the nurse ratio is 3:1 as opposed to 2:1 in the ICU. They won't make the mistake again of sending him down to the 1st floor too soon!

From here -- we work on gaining strength, normal body function and sitting in a chair. The trach hole will be reduced until the trach is deemed unnecessary and removed. He may go straight to Cottage Hospital Rehab Unit - or spend some interim time getting stronger in a local assisted care.

Meanwhile, he gives me kisses - and even pulled me into bed with him the other day when the side was down, so I could cuddle with him. It was heaven!

SHIT!!!! He just threw up big time! Poor baby. I hate this eternal whiplash!!