Flirting With Reality

My "Most Interested Party" Theory: Why the MIP Theory is Essential to Advocates...AND to Life!

2010-06-24T17:44:00.000-07:00

Many people have told me that they thought it's been remarkable how involved I've been in Michael's ICU and Rehab experience, not leaving his side if I could help it, assisting the nurses, prodding the doctors.

While I admit I'm grateful to have discovered the important gift of what a strong stomach I have for messy medical stuff, my actions were determined largely by a theory I developed years ago.

I call it my "Most Interested Party" Theory and it goes like this:

The person who is the Most Interested Party (MIP) will get something done more resourcefully, more quickly and more effectively than any other party involved.

Also, the MIP will make sure that Something is done - as opposed to Nothing is done, Nothing often being perfectly acceptable to a lesser interested party.

Collorary:

One's willingness to allow any another party to handle any action that directly and undeniably affects you is determined by:

1. Hitting a "Knowledge Wall," i.e., it requires expertise you don't have, such as medicine, dentistry or computer hard drives (although Google and other search engines have brought fast personal education in quite nicely to delay this factor)

2. Virtual Helplessness, i.e., a rule or boundry you can not control or cross, often connected with a government or any other bureaucracy that has guards present

3. Real Trust, i.e., the other person cares as much as you do about the result or is evolved enough to really care about the fact that you care

4. Diminished Passion, i.e., you don't care that much, so the Result Risk (RR) is acceptable

This theory has stood me well over the years, especially as an advocate for someone I love (like Michael), especially when at the mercy of a hospital, which, after all, is only staffed by mere and extremely busy human beings.

Control Freaks and Others Love the MIP Theory

Hm! I can hear you asking, is there a mild scent of Control Freak coming off this theory? No, I declare, not for me. Normally, I'm kinda easy-going and laissez-faire.

I do admit that the MIP Theory is indeed the underlying belief system for any respectable Control Freak, however, you don't have to BE a Control Freak to use my Theory.

You simply have to have observed that you've been disappointed by other people's lack of priority to deal with something you thought was important. I felt anger about this when I first discovered it. Why don't they care as much as I do? How dare they?

But now I feel no rancor is needed and consider it a simple Fact of Life: Nobody cares more than you do about what you care about. My theory just stands to reason.

So, I ask myself in any given situation, "How much do I care?"

If the answer is "Not that much" or "Somewhat," then I'll take my chances delegating, suggesting or asking.

BUT...if the answer is "Passionately!!!!!" then I know what I have to do.

Everything I can.

The Gym...OR...Pills?

2010-05-14T00:15:00.000-07:00

I've got weight gain...Michael's got muscle atrophy.

Is there a pill we can take to make it go away?

I actually googled the weight reduction aide Alli today, which works by "decreasing absorption of fat by the intestines," and reducing the calories you absorb - IF you're already doing low fat, low calorie and high exercise.

Which I am - since the healthy lifestyle is my preference - so, it sounds tempting. A little boost would be appreciated.

Immediately, I found a report from the Mayo Clinic - whom I respect - saying that this expensive pill might only take off an extra six pounds a year. And on days when you might eat more than 15 grams of fat, might cause "unwanted effects" like urgent bowel movements, diarrhea, and gas with oily spotting.

I immediately unwanted it.

Then I thought - hmmm! I wonder if I should take something thermogenic to really boost my body's fat burning ability?

Then I found a report from Dr. Andrew Weil - whom I respect - saying that thermogenics, which uses stimulants to boost your metabolism and suppress your appetite, might create short term weight loss, but "you won't maintain this weight loss without eating less and exercising more" - plus - "several of the ingredients are potentially dangerous."
Sigh!

So today, Michael and I had appointments with Trainers at the gym - his trainer having special expertise in working with people fresh out of medical rehab. He actually did a plank today - and the recumbent bike. Gym-Boy is back!

My trainer, the amazing Debbie, is five years older than I am (and I'm 57 going on 40) and leads the "I Hate to Run" class, as she is an advocate of slow, easy running. That made me look at her warily.

Then she said the magic words to me: "When you run, you can eat anything."

I looked at her thoughtfully. "But I don't run," I told her, "unless someone is chasing me." I explained that I was the fat girl in P.E. class who dreaded the words "Take a lap" even more than "Let's pick teams."

But I will say, I am going for a natural thermogenic...

"Trust me," said Debbie.

So today, for the first time in my life, I jogged in two short spurts on the treadmill. Just like those fit, young girls I see who actually sweat.

I was surprised. I was not out of breath or uncomfortable, yet my always excellent heart rate soared thermogenically. And, after months of sitting, it felt good to move. Debbie said that those two short bursts actually took me a quarter of a mile. Hmmm.

So I'm going to let Debbie have her way with me. Cautiously. Slowly. Guardedly.

Because she absolutely guaranteed me there would be no gas with oily spotting.

Patricia's New Magic Running Shoes -
Expensive, Comfortable & Thermogenic

Flirting With Reality: Just Interviewed by Alan Cohen on his Hay House Internet Radio Show

2010-05-14T00:14:00.000-07:00

Flirting With Reality: Just Interviewed by Alan Cohen on his Hay House Internet Radio Show
www.Tiny.cc/weightlossinterview

Just Interviewed by Alan Cohen on his Hay House Internet Radio Show

2010-05-06T14:02:00.000-07:00

Inspirational speaker and author Alan Cohen had me as his guest on his Internet radio show on the Hay House Wisdom Community website as a weight loss expert ( ironic for me, since my job now is to put weight ON someone, at which I've been very successful: Michael's up from 110 to about 130 now - yay - and I'm up about 15 pounds - damn!).

It was good to be back in the saddle as in inspirational speaker - especially as this is an unexpected season of my life where I get to walk my talk. Makes you think about what you believe. And I stick to my firm belief that you have to focus on health - not weight - or your inner rebel will show up immediately and stay for dinner.

The interview will be available at HayHouseRadio website at for two weeks, starting May 7th (and then you need to have an ID/password to access archived interviews) - but I'll publish it on my website soon, as this blog won't accept the link.

So if anyone out there is visiting this blog for the first time, I want to give you the fabulous piece I read on air that's about self-acceptance. The author was unknown, so I cleaned it up and rewrote it. (Note to authors: ALWAYS put your name on your work!)

WHAT WE CAN LEARN FROM THE ROSE

Author Unknown

Rewritten by Patricia Alexander

When we plant a rose seed in the earth,

we notice that it is small

…but we do not criticize it as rootless and stemless.

Rather, we treat it as a seed,

giving it water and nourishment.

When it first shoots up out of the earth,

we don’t condemn it as immature and underdeveloped;

nor do we criticize the buds for not being open when they appear.

Rather, we stand in wonder at the process taking place and give the plant the care it needs

at each stage of its development.

The rose is a rose from the time it is a seed

to the time it dies.

At all times, it contains its whole potential within it.

As a result, it is constantly in the process of evolving.

Yet, at each stage…at each moment…

…it is perfectly all right as it is.

I believe that it is only from this point of self-love and acceptance that you can become the healthiest version of yourself you can be. We are all roses at our own stages of life, thorns and petals all part of the deal!

ICU Visit For Closure

2010-03-22T18:57:00.001-07:00

We returned to the Intensive Care Unit at Twin Cities in Templeton to Say Thank You! We're Alive and Well - Thanks to Your Care! (The lady on the far left is the caring and resourceful Anna, who'd bagged me my illicit cot, bless her!)
--------------------------------------------------------------
We knew we had to do it.

It was good manners. It was an act of encouragement for their souls and ours. It was closure.

We knew we had to back to the ICU where Michael had spent 33 fateful days and nights.

Plus, we had a 5-pound box of See's Candy to give the staff, the grateful compliments of Bill and Susan Burgos. (Do you know how many free samples they offer you while they're filling a 5-pounder? Oy! Don't ask!)

We both had a certain amount of trepidation about going back. Although Michael has no memory of that time, he feared what he might see behind the ICU double doors. And as for me - I remembered everything.

None of the doctors who treated Michael were there, but I knew all the shift nurses - and they were completely THRILLED to see us. They had just released several patients and the ward was light - so they could spend time with us and it was less stressful for Michael (no one yelling, no buzzers or bells. It was meaningful to the nurses to see Michael walk in on his own power, a little thin, but obviously doing so well. He thanked and hugged them multiple times.

They hugged me lots and told me how good it was to see me rested. "She was exhausted!" They exclaimed to Mr. B.

They said many complimentary things to him about me. "She wouldn't leave your side, even to go to the bathroom unless someone was with you," remembered one nurse. Michael smiled lovingly and squeezed me. My face trickled the whole time like a leaky boat.

The isolation room with the outer alcove for changing into gown/gloves/mask was empty and wide open, so I took Michael in and showed him where we'd spent most of our time. As we left, I said to the nurses, "Hey, someone left their slippers under a chair in that empty room."

"Oh that's not an empty room," they answered. "They took that patient out to run a test."

Whoa! When we were in that room, you could not have mistaken it for empty. The chair bed in the corner covered with blankets...bags of food...a suitcase...an iPod...cards taped to the wall. I sighed, hoping it meant that the occupant wasn't going to be there long and not that he didn't have someone there for him.

Well, that hadn't been so bad. Closure!

BAD REPLAY.

Then we went downstairs and Gerri, the lovely lady in Admissions, called us over to sign our book. She'd come up to the ICU several weeks in, saying God had put us on her heart and that she'd been praying for us. She brought us a book by Max Lucado about hope, and I'd given her a copy of our book. So many people like Gerri with generous and spiritual hearts held us up during that difficult time.

So now we were standing in her office and she was telling us how she'd known Michael was extremely sick when we'd first come in. She talked on for a while and Michael indicated he needed to sit down. As we both slid into the two chairs on the other side of Gerri's desk, I suddenly had a flashback. It was a physical duplication of how we started the whole nightmarish journey.

I think I almost started to hyperventilate. Gerri had to take a call and I clutched Michael's sleeve. "I need us to leave," I whispered urgently - so we stood up. Gerri got off the phone, grabbed our hands and prayed with us and we all hugged - and finally we left.

All in all, Michael found the whole visit less disturbing than he'd feared - but I was kind of a wreck for two days. I felt overwhelmed, sad and fragile. To relive that moment was So traumatic.

Emotionally, Michael took care of me. He was so sweet and attentive. He's intensely aware that I'm recovering as much as he is and we are definitely taking care of each other. I went into a cocoon mode as much as I could over the next two days, hanging out in our bed, watching my Gilmore Girls DVDs, doing puzzles, reading, eating (my lifelong standby comfort), and cuddling with Michael as he stroked my forehead, and playing "Stuffy Theater" with Michael and our stuffies. In other words, I turned to all my comforts.

Hey, now's definitely the time to walk my talk.

Two days later I awakened feeling more ready to face the world.

It's not lost on me that there's some kind of strange symmetry to us starting and finishing the ICU part of this journey in those two chairs.

I'm just so relieved to be on the finishing end of it.

1st Entry From Michael Himself!!!!

2010-03-03T16:35:00.000-08:00

DICTATED TO PATRICIA BY MICHAEL:
----------------------------------------------------------------------------------------------
It has been made clear to me that while I was in intensive care, my organs failing, my body reeling, that my spirit needed to make a decision.

Should I go to the light? Or return to that body, with all its challenges, and live out the remainder of my life in physical form.

In many ways, it seems counter-intuitive to return to physical form and face the long journey of regeneration, retrieving my lost abilities from the stroke, existing for months in a weakened 112-pound body, working to regain some semblance of my pre-illness self.

The answer, simply enough, is I came back for love.

To express love, to receive love, to know love, to share love. I have been blessed with a life enriched with sweet individuals who have reserved special little places for me in their enormous hearts.

And I am especially fortunate to have one particular person - my "Whosis" - with whom I share a daily life exchanging great fondness and affection. Patricia and I share the deepest of joyful soul connections and, in addition, we find great pleasure in each other's personalities.

How lucky am I to spend my life with a person I love and like - a person who entertains me, who stimulates me - who always bring a smile to my face - who can make my blood boil (PATRICIA: Is that for being sexy or angry? MICHAEL (LAUGHS): We'll leave that up to the interpretation of the reader!) - a person who sweetly purrs next to me at night (PATRICIA: You mean snores!) and giggles at my humor during the day.

A person who's loyal beyond question, steadfast beyond all reason, a person who has displayed for me the truest meaning of commitment, the dearest friend a person could ever have in a lifetime - and my forever sweetheart - soon to be my Mrs. B.

So there! I came back for love.

And I don't regret it. (Although next time my spirit inhabits a body, I'm going to order bigger biceps and two functioning kidneys.)

"Why me?"
There is a voice inside of me that does express itself and asks "Why me? Haven't I had enough physical distress and challenges for a lifetime? Why all this crap now?"

I usually reframe the extraordinary health challenges that have been brought my way as some of my most profound life lessons. They soften me by making me more empathetic, both to myself and others. I tell people I wouldn't wish this suffering on anyone, much less myself.

That always moves me, because I feel a great compassion for self...which is my biggest life lesson.

My latest tussle with the nasty H1N1 virus has afforded me the opportunity to be of service as a spokesperson for vaccination. I have a simple message for everyone: Why risk spending 40 days in Intensive Care when you can just get a shot and protect yourself?

If my message reaches anyone and convinces them to be inoculated, then my suffering has not been in vain.

(How's that for a biblical semblance!)

CA Dept. of Public Health Wants Michael to be Poster Boy for Vaccinations!!

2010-02-25T09:33:00.000-08:00

Wow!!!! I'm Going to Be the New Poster Boy for Getting a Swine Flu Shot!!"
-----------------------------------------------------------------------------------------
This just in! Got an email from the Public Relations firm that represents the California Department of Public Health. It seems someone at the CDPH saw the newspaper article and suggested we be contacted to see if Michael would be interested in participating in some media interviews.

And, unlike the SLO Tribune, they like that we wrote a book about mind/body/spirit health!

As you can imagine, Michael was on board - and you know I was. (They're interested in my take as a caregiver who went through the experience with Michael - and as an inspirational speaker who addresses caregiver groups.) They promised not to schedule any phone or article interviews for early in the morning (which Michael would have requested even before the Swine Flu) and if there's TV, we can probably do it from the San Luis Obispo TV station.

We connected with a very pleasant young woman, Kierstan DeLong, who came to realize quickly that we already had some media experience from promoting The Book of Comforts.

"You're making my job so easy!" she said with appreciation. Our pleasure, Kierstan!

And it really is. Our hearts are to use our painful experiences to help others avoid repeating them. And if we happen to promote the book and speeches and workshops along the way, well, it's in alignment with our life's mission to encourage others to realize the healthy power of being Reasonable Hedonists.

NEW SWINE FLU OUTBREAK COMING
This is all happening because the CDPH is expecting a third outbreak since the public is suffering from the delusion that the Swine Flu has run its course (they can't give the vaccine away)...and with spring break coming.

What people don't know is that it takes two weeks for the vaccination to take effect - so when it comes to students - coming to your community soon - ideally, the Health Dept. wants them to get vaccinated before spring break. (People also don't know that if they do get a cold or flu that they should see their doctor early, not late, to get the Tamiflu, just in case, as it's the only thing that can knock the Swine Flu back to a less severe version.)

The PR firm is planning a wave of media featuring a doctor. But they know that the public also wants to hear from a non-doctor person, too - and that's Michael.

I KNOW I SHOULD GET A VACCINATION, BUT...
Many of you have written to us that our situation started a fire circle of your friends getting vaccinated. But I can also tell you that I have had people look me right in the eye, express sincere sympathy for what we've been through - and then admit they are NOT going to get vaccinated! (Hold me back! Hold me back!)

You know, I understand people waffling about getting a vaccination, since many of us are suspicious about them or have heard stories about bad side effects. However, after what Michael and I have been through, I couldn't be more clear about how much better it is to GET THE DAMN VACCINATION!!!

Triple that if you have a compromised immune system...
...or live with someone who does...
... or work in an environment where you come into constant contact with people.

And by the way, let me define "compromised" or "at risk" immune systems: that's when you have a health-affecting contributing factor, such as being a SENIOR, OBESITY, CANCER HISTORY, DIABETES, HEART ISSUES, LUPUS, ASTHMA, ANEMIA...you know - anything on that noxious list they have you check off when you see a new doctor. Sadly, it's rare to be able to leave all those boxes unchecked, isn't it?

FIND YOUR LOCAL SWINE FLU VACCINE HERE
Kierstan sent me this fabulous link to find where you can get your vaccination:
Check out the vaccine locator tool at www.cdph.ca.gov. You can simply type in your zip code for a comprehensive map and list of both free and paid vaccine clinics near you. You can also text 30644 and enter the words NO FLU and your zip code to receive a message back with the nearest vaccinator information.

Please write me at patricia@patriciaalexander.com or comment on this blog to say you've gotten your vaccination. It will encourage me not to throttle people when they don't.

P.S. - Special thanks and kudos to my Weight Watchers Territory Manager, Bobbie Surra, who was touched by our troubles enough to arrange to offer H1N1 vaccinations to people attending the recent Open House at various Weight Watcher locations. Bobbie, you rock!

(And I look forward to ending my Leave of Absence from leading WW meetings in about a month. Hugs to all my members and thanks to Terrie and Juana for taking over my meetings.)

Home Again, Home Again - Jiggity Jig!

2010-02-22T21:28:00.000-08:00

Isn't Michael the Picture of Cozy?
------------------------------------------------------------------------
There's our kitty Valentine in her bed in front of the fireplace...there's fattening food on the table and - what do we see? - oh YES - a giNORmous bottle of CHERRY COKE! Oh, and a woman who is waiting on him hand and foot - AND LOVING IT! What more could a man want?
----------------------------------------------------------------------------------
There's only one word for the last three days, which was our first time home together after 55 days of medical hell: Dee-lish-ious, Dee-lerious and Dee-lightful.

I will say I worked really hard - to ignore all the chores that surrounded me, that is. And they are plentiful. Piles of mail, piles of clothes from our double unpacking, piles of unpacked office boxes deserted in mid-move. Oy!

But being the Reasonable Hedonist I am, I delicately shoved it all aside with a nudge of my toe and walked directly to the couch from the bed, and from the bed to the couch, with a few stops in the kitchen.

What a joy it was to cook my sweetie's favorite foods! He still doesn't eat large quantities - and never did before this happened - but he does eat often. A favorite nosh is a corn or flour tortilla with some shredded Mexican cheese melted on it, chunks of avocado, spread with salsa and sour cream. (And for this he thinks I'm a brilliant cook.) Oh, and mini-hot fudge Sundaes.

GRAB BARS IN THE SHOWER
We had Deric the always-good-smelling handyman install some grab bars in the shower and Mr. B. had the delirious pleasure of showering for as long as he liked and without a fully clothed nurse's aid instructing him to wash his private parts - while watching to see that he does.

(Although I do remember that when the nurse's aid was lovely Linda helping in the two-minute shower, she was constantly giggling at high volume - but what the heck - I can deny him nothing.)

Coming home, Michael had some anxiety about being able to climb our stairs. He thought he might have to sleep downstairs, in spite of dreaming wistfully of our king-sized bed. But since the stairs are not steep and have two landings, he did just fine with them - as, frankly, I knew he would.

I will say that our legs are sore from going up and down the stairs many times. Yes, mine too - as I'm out of shape after all that sitting. So - home IS rehab.

OUTPATIENT REHAB STARTED TODAY

But there is real Rehab and it started today in Paso Robles. Here is Maria, the Physical Therapist, assessing Michael's balance and strength. He did really well. She asked him to walk around the gym area for six minutes - and although he didn't know if he could do it, he did it.

I will say that Michael was fairly traumatized after two hours of Occupational and Physical Therapy, mainly because they had to assess him. While they look at it as "strengths and challenges," he mainly felt demoralized with how thin and weak he is in comparison to how he was just two months ago.

I tried to encourage him to put it into perspective while also trying to validate his feelings. Tricky stuff. Kind of like poking a bear while explaining that the poking is good for their hide.

Thank goodness I make a mean mini-hot fudge Sundae!

Here's the SLO Tribune Article About Us Today!

2010-02-21T05:03:00.000-08:00

Well, the article finally hit today - and we made the FRONT PAGE!!
We thought it was cool to see our own mugs through the newspaper dispenser machine window. Check out the article below or at: http://tinyurl.com/tribunestory .

Let us know what you think. We think it's sweet, focusing on our love and a new understanding of the importance of vaccines when you're immune-system compromised. It's a little underdone, but with only two Glaring Errors:

1. Michael went down to 110 pounds and is now around 114-116, NOT 124 - and -

2. It was NOT a medically induced coma, which is different from the deep sedation Michael had.

... and three Major Omissions:

1. Hello! Most newspaper stories mention your occupation! Award-winning local authors here! (Get The Book of Comforts by order in any bookstore or at EarthTones in Paso Robles.)

2. It's a shame they wouldn't give the reporter the space to write about Chris Van Huff coming to inspire Michael.

3. A sidebar showing where to get your Swine Flu shot would have been beneficial to the community AND letting people know to see a doctor quickly to get Tamiflu meds to keep the flu from getting to hospitalization stage, Swine or not.

See my added comment to the article at the end that will at least show up online and clarify some of that!

Published: Sunday, Feb. 21, 2010

Paso Robles man fights for his life against swine flu

A Paso Robles cancer survivor who’s been through more than his share of medical ordeals is recovering from his toughest one yet: an intense battle with the H1N1 virus that brought him to the brink of death

By AnnMarie Cornejo | acornejo@thetribunenews.com

Michael Burgos’ last memory before spending 33 days in the intensive care unit at Twin Cities Community Hospital is of playing golf with friends.0

That was before he was infected with swine flu.

The ensuing battle to survive is something he bears physically. After losing 24 pounds in almost as many days, Burgos is now frail. He walks gingerly because his coordination is haphazard, the effect of complications brought on by the illness that almost killed him. Even his 124 pounds seems a lot to carry.

Click image to see caption

“I keep thinking this is not real,” he said. “This can’t be happening to me — it must be just a dream because I woke up like this.”

Burgos, once an opponent of vaccines for the flu, now champions getting them.

The life-threatening experience Burgos has endured remains largely obscure to him. The 51-year-old Paso Robles man remembers little about the last few months. His longtime companion, Patricia Alexander, shares pieces of the ordeal with Burgos as he is ready, and has chronicled the experiences on her blog. Burgos plans to read it one day, but for now he remains focused on re-establishing his health.

Healing will take time. In addition to learning to walk again, he must also learn to read and write once more. A stroke caused by the flu affected the motor skills on the left side of his body and weakened his eyesight.

“It is really shocking not to be able to write your own name,” Burgos said. “I was a gym rat, and now I can barely walk. It is freaky.”

Childhood cancer

This isn’t the first time that Burgos had to fight serious illness to survive.

When he was only 2 years old, he lost a kidney to cancer and went through radiation treatments. The cancer came back in the form of lymphoma when he was 28, and he underwent seven months of chemotherapy.

Since then, Burgos has lived a regimented lifestyle: routinely going to the gym, eating well and sleeping often. He rarely got ill, and never contracted the flu or the common cold.

“I was in perfect health,” said Burgos. “I thought I wouldn’t get it. I learned a big lesson.”

Now he is drawing on inner strength to survive again.

“I have to bear down and focus inside,” Burgos said. “It takes a lot of energy on my part to stay optimistic and look beyond the stresses of right now.”

Numerous complications

Alexander spent countless nights sleeping on a cot next to Burgos in the intensive care unit. The story she tells differs vastly from what Burgos is able to share — it includes painstaking details of every medical procedure and scare along the way. And there were many.

Burgos suffered complications from the swine flu including pneumonia, kidney problems, a medically induced coma and a small stroke.

He was intubated twice to help him breathe and fed for nearly a month by a feeding tube in his stomach.

“I couldn’t help but feel that the lifesaving things were just becoming the next torture,” Alexander said. A happy ending didn’t seem feasible, she said. “At one point I was ready to let him go because he was suffering so much.”

Burgos, who spent several weeks rehabilitating at a hospital in Santa Barbara, was allowed to go home four days ago. There is still a long road to complete recovery with at least a year of additional therapy needed.

Now taking the vaccine

Burgos said he was reluctant to get the H1N1 vaccine because he was so healthy and couldn’t conceive of purposely putting a virus into his body.

“I read about the virus in the paper, but I really thought there was no way that I could be vulnerable to it,” Burgos said.

He now advocates for the inoculation and urges everyone he knows to get it. He’s even signed up for the flu vaccine — something he has avoided the majority of his adult life.

“The problem with illness is not the toll it takes on a sick person,” he said. “It was harder on Patricia than me, and it was difficult on my family, who had to all watch a loved one get so ill.”

The illness has brought him and Patricia closer, he said. The two plan to get married later this year.

“Patricia has been here every step of the way, even when I was not aware of it,” Burgos said. “Family members tell me how much she was there, and it makes me love her all the more.”

Reach AnnMarie Cornejo at 781-7939.

HERE IS THE COMMENT I ADDED TO FILL IN SOME OF WHAT GOT LEFT OUT:

patricia7771 wrote on 02/21/2010 03:42:54 AM:

Additions to the story on us: This medical nightmare has challenged us to walk our talk, since we are co-authors of an award-winning inspirational book, The Book of Comforts: Simple, Powerful Ways to Comfort Your Spirit, Body & Soul (at Earthtones in PR). Patricia is also a motivational speaker & local Weight Watchers Leader; Michael is a retired Marriage/Family Therapist.

Our work has given us a spiritual perspective on this strange twist of life, heightening our gratitude, bringing moments of humor, pathos & beauty. Read our blog at patriciawords.blogspot.com.

1 correction: Michael is down to 114 pounds, but eating heartily with a special joy from Cherry Coke, which he craved incessantly.

Also, our thanks to Chris Van Huff of Templeton who miraculously walked into Twin Cities as we were asking for him, & encouraged Michael, since Chris survived everything Michael was still fighting.

Kudos to the ICU staff for saving M's life & getting me an illicit cot, & to our fab friends & family.

Last Day Visit to the "Dizzy" Doctor & Top 10 Things We Won't Miss About Rehab

2010-02-18T01:37:00.000-08:00

MICHAEL GOES "WHEE! HANDS UP FOR THE 'E' TICKET RIDE" ON THE CHAIR LIFT INTO THE TRANSPORT VAN FOR A TRIP TO THE "DIZZY" DOCTOR
------------------------------------------------------------------------------
Our last day we got to take advantage of the opportunity for Michael to see a doctor who specializes in dizziness. She felt he had a form of vertigo that can be caused by a small stroke. It can usually be corrected with specific movements of the head to reposition crystals in your inner ears. Today, she did one side, and she'll do the other side in a couple of weeks.

No, I am NOT making this up. (Google "BPPV" if you don't believe me!)

=========================================================
Top 10 Things Michael Won't Miss About Cottage Rehab (with Apologies to David Letterman)
=============================================================
10. The guy sitting next to you at breakfast has his left hand resting in his scrambled eggs.

9. Getting stool softener, whether you need it or not.

8. The Nurse's Aid leaning over you to check your Blood Pressure just finished a plate of spicy enchiladas for lunch.

7. Tasteless mashed potatoes and gray gravy with every meal.

6. An alarm tab attached to your shirt at night that pulls out when you roll over and screams like a fire alarm, giving you a heart attack.

5. Having at least 3 people be alerted to your bodily functions, in detail, with viewing privileges, at all times.

4. The guy sitting next to you at lunch just hocked up a lung.

3. The 5 a.m. blood draw, whether you need it or not.

2. Sounds like the incessant dinging of a call light being ignored by the nurse's station; the clanging of metal trays being dropped; the midnight cocktail party at the nurse's station across the hallway; the banging of the waste baskets as they change them...at 1 a.m.

AND #1. The guy sitting next to you at dinner has his left hand resting in his mashed potatoes and gray gravy and his right hand resting in his applesauce.

AS WE LEAVE REHAB, WE MURMUR OUR FAVORITE FOND FAREWELL (coined on our first "Phase Two" trip outings to restaurants):

"See Ya, Suckers!"

Sent from my Verizon Wireless BlackBerry

WE'RE GOING HOME THURSDAY!!!!

2010-02-17T07:52:00.000-08:00

(OOPS! THIS IS WHAT HAPPENS WHEN PATRICIA SENDS A PHOTO FROM THE BLACKBERRY - THIS ISN'T THE ONE I THOUGHT IT WAS!)

LET'S CALL IT "MICHAEL AND PATRICIA GRINNING DOWN AT THE WHEELCHAIR MICHAEL WON'T NEED VERY SOON."

We went to Solutions Rehab for a tour...we saw...we talked...we reconsidered...we decided: we're going home!

Sister Karen researched and discovered an out-patient physical therapy place in our own home town of Paso Robles (yay, Karen!) that does physical and occupational therapy - and there's a well-recommended speech therapist (for spatial and cognition work) in San Luis Obispo.

Although it was worth considering the value of 6-8 weeks of 8 hours a day at Solutions, Michael is so sensitive to smells, sounds and disturbances in his "Force" right now, that it is entirely disruptive to his system to extend our life elsewhere.

Out-patient may only be two hours 3x a week - but Michael will be there wholeheartedly and with more energy after being in our own comforting and controllable home.

Everyone together now: click your heels. "There's NO place like home! There's NO place like home!"

Yes, Dorothy - we're going back to Kansas (only with wineries everywhere).

Thank God!
Sent from my Verizon Wireless BlackBerry

Mr. B.'s Eating Out; Touring New Rehab

2010-02-15T09:17:00.000-08:00

Above are real photos of Michael thoroughly enjoying food in places that are NOT Cottage Rehab!

One's my hotel room, with a hot fudge sundae (and 3 cherries) and the other is Stacky's in Summerland, with a real, NOT digitally inserted, French fry and our fav turkey Ortega sandwich. (Best Valentine's Day ever splitting that sandwich with him, like old times!) Mr. B. bragged he'd only eat ONE French fry; I bet he'd have to eat at least 4: I won the bet! Hey, we ordered a small fries to share and left 7/8 of it. Who DOES that? This is no time to limit oneself to one fry...

Transitions galore!

It's been difficult to post here because I'm with Michael in a whole new way now that he's in his right head and we've both been cleared for travel. Not complaining, mind you.

I'm just tired in a different way when I do get back to the room. I don't have much left and am desperate for sleep.

My sweetie, being the sweetheart he is, tried to impose an 8:30 curfew on me so I'd get back to the room earlier in the evening - but we both have trouble observing it. We start cuddling in his narrow Rehab bed and I get all peaceful and dozy. Before we know it, it's 9:30, then 10.

RESTRICTIONS REMOVED! No more shrieking "Tab" alarm clipped on him at night. No more being belted into the wheelchair. No more aspiration precautions. No more soft foods only. No more walking only with staff - Patricia qualified. No more stuck in Rehab!

Today we get a tour of Solutions (all Rehab/no hospital) in Goleta, where we'll be for 3-6 weeks. We transition Thursday morning. Everyone together now: YAHOO!

SWEET TIME OF US-NESS. Michael and I feel so much in love. We're keenly aware of the gift we have in each other. And Michael's being a sophisticated communicator about how we can get through this sometimes tricky part of healing and transition without our relationship taking a hit.

I respect him so much. I tell you there's nothing better than being with a trained Marriage and Family Therapist, with high communication skills, who's in touch with his "feminine" energy - but is 100% heterosexual!

Gotta jet. Promised my guy a bagel.

Sent from my Verizon Wireless BlackBerry

PHOTO ADDED! Wed & Thurs: Walkin', Steppin' & Preppin' to Leave!

2010-02-11T15:27:00.000-08:00

Michael With Physical Therapist Erin As We Practice Getting In and Out of the Highlander. It Was Easy-Peazy! Our Car's the Perfect Height - No Stepstool Needed. And Michael's Ready to Boogie!
-----------------------------------------------------------------------------------------------
SHORT ENTRY DAY.

Cute Anecdote. When the time came for me to leave for my Oxnard/Ventura comfort mercies Wednesday, (chiropractor massage and dins with son & grandbaby), Michael cleverly expressed his conflicted feelings about it.

"I want you to go and have a good session with Dr. Knight -- don't leave -- and then have a wonderful, soothing massage with Cathy -- don't leave -- and then have a warm, loving dinner with Mike and Liam -- don't leave."

We laughed -- and I left.

While it was good to tend to myself this way, it made me realize just how numb I've made my body since mid-December when all this started. The body work just poked and prodded the nerves awake enough for me to go "OW!"

I was sore everywhere - and almost worse off for starting a process that couldn't be finished quickly. But it was time to start.

So I go back to the chiropractor and masseuse Friday and hope for more relief than pain.

WHY IT'S SHORT ENTRY DAY. The reason this is a short entry day covering three days is that last night Michael started asking questions about the time he doesn't remember. I began with good stories (the miracle of Chris Van Huff showing up the day we asked if the former Swine Flu/Pneumonia/Stroke ICU patient, fully recovered, could be called) - and it progressed to Michael hearing some of the bad moments.

He was in awe. And had even more increased empathy for my part of the experience, all a blank to him.

When I got back to the hotel room last night, I was emotionally drained. I hadn't relived those memories at all, especially since the present is still demanding, though a much happier kind of demanding.

Now it's morning and I've got to jet.

More next time!

P. S. We leave here Thursday of next week for Solutions Rehab (it's Rehab minus Hospital environment) and Michael practiced getting in our Highlander, which is the perfect height, no step stool needed. He also practiced stairs, which we have at home. His progress is AMAZING!!!! (And he knows it now on a deeper level after hearing how far he's come.)

Sweet Tuesday; Getting to the New Normal

2010-02-10T09:18:00.000-08:00

This picture is from Saturday when my brother Russ briefly dropped in on his way down from our Paso Robles house to his own in La Crescenta, bringing us more clothes and a this-and-a-that. (He's going back Wednesday for more housesitting.)

He also brought Mr. B. a new watchcap that says PASO ROBLES and looks quite dashing on him, as you can see. DON'T I HAVE THE BEST BROTHER??
-------------------------------------------------------------------------------------------------
Well, the tummy tube hole in Mr. B. has healed overnight, as predicted, and he was able to eat without leaking, as hoped. However, he did suffer some stinging and asked for the painkiller midday (Norco). That always affects his head/dizziness a bit, which affects his physical therapy effort - yet, he continued to walk 50 feet distances with Erin and me by his side for safety and do arm exercises with elastic bands.

He did so many leg exercises yesterday that the legs were a bit shaky today (Tuesday) as well. Understandable.

Calling Testosterone! Epiphany! We realized that before this, with aging and chemo taking its hormonal toll, Michael had not successfully built muscles at the gym until he'd gotten testosterone shots. We ran that concept by the fabulous Dr. Ross, and he's looking into getting Michael a patch for testosterone, so he can have more success at rebuilding his atrophied muscles.

Coumadin Too! Another epiphany! The fact that Mr. B. had been on Coumadin for blood thinning in the ICU, which was halted due to some test, got lost in Michael's voluminous medical records. Dr. Shapiro (here) had to call Dr. Shapiro (in Templeton) to affirm my affirmation that he'd been on it - and they started him on it him again, with a 5-day overlap with the other blood thinners until the Coumadin takes over. He'll only have to be on it for about six months, and Michael's relieved about it, because he expressed that he does fear another stroke.

The reason they prefer Coumadin to Locinapro & Lopressor is if they need to thicken his blood for clotting purposes, they can do so more quickly by using Vitamin K; with the other stuff, they have to wait 24 hours. (and Margaret, I did take the opportunity to ask Dr. Ross if he'd ever actually seen a vitamin, which you had once posed as a fascinating question. He stared at me blankly for a minute, then said, no, but there were special microscopes that could. Humph! Says he!)

Love & Marriage. Michael and I had a sweet afternoon, talking about our relationship and how this has brought us closer. He expressed unselfish concern for my health and well-being, urging me to take care of myself, leave earlier and sleep in a bit - although, he adorably added he would miss me terribly.

I'm actually taking myself to my old friend and chiropractor, Dr. Roger Knight, today in Oxnard, as my hips have gone out without me. Then I'm going to take my son, daughter-in-law & grandbaby out for Chinese food, all things I've longed for. But isn't he the best fella - worrying about me in all this?

Then Michael and I spoke of getting really, thoroughly & legally hitched when all this is over and we're back to our life. Not the walk-down-the-aisle kind of wedding, as that's not us. But the huge-party-with-a-ceremony-in-the-middle kind of wedding. We've actually got about four friends who can marry people, and may have to have them all take a shot, so no one's miffed!

More importantly, my darling said the most romantic and touching words to me about how much I mean to him and how this whole bizarre journey has solidified his belief that he wants to spend the rest of his life with me - and I say DITTO!! Mr. B. is the love of my life - and marriage is the 1950's happy ending in all the Cary Grant/Doris Day type movies I grew up on, so I'd like it, though I haven't pressed for it. Although, my best friend, Shelene is gleeful to the point of delirium, as she predicted it right from the beginning. To me, it's just a cherry on top of an already delightful banana split.

But, hey! Any excuse for a party!
DORIS AND CARY!

RED LETTER DAY! Stomach Tube Out!!

2010-02-09T08:02:00.001-08:00

Hurrah! The last invasive medical solution-that-becomes-the-next-problem is GONE!!

Dr. Shapiro took out the tummy tube Monday morning while Michael squeezed my hand (a local anesthetic was used, but basically they just take it out quickly like ripping a band aid off a hairy arm).

A bandage with stupid, insufficient tape was applied - I pointed the stupid tape out, of course, but they had to see it leak and get all over the bed and Michael's clothes before they would bring out the industrial strength bandage and then put a cotton pad with the same stupid tape over that.

(See, just when I try not to be overly assertive, something like this happens and I kick myself for not wrestling them to the ground on what I know should be done differently!)

Anyway, it required yet another bandage change after lunch - and Michael was grossed out and afraid to eat dinner. They told him the wound would heal overnight and just to cut down on liquids.

"But I don't want dinner to seep out," Michael said to PT Erin and me.

"Wow!" I said. "You hardly ever hear that sentence!" And we all laughed.

ARM EXERCISES WITH BOSSY DORIS - IN THE PATIO - WITH BILL LOOKING ON.

AND YES, THAT IS MICHAEL'S LEFT ARM, AND DORIS IS ONLY PROVIDING SUPPORT. HE'S TOTALLY LIFTING A TWO-POUND WEIGHT...AND HE HAS A FRESH HOLE IN HIS STOMACH, TOO. THAT'S HOW MUCH STRONGER HE IS!

----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

SPECIAL GIFT FOR SPECIAL PEOPLE.

I took this picture of my necklace, which I bought at the Cottage Hospital Gift Shop soon after we got here. Its message has been symbolic to me of our journey, and I've worn it daily. (Boy, my Blackberry takes great photos, doesn't it? Looks just like a photo in an ad.)

Anyway, I gave mine to Karen before she went back to SD to thank her for being my special ICU nursing buddy as we battled Michael's constantly spiking fever and illness back in Templeton (shudder).

I'll be gifting a few more of these as thank yous to other special women who have been in the front lines with me on this strange and stressful turn of life.

If I could afford it, I'd get this necklace for the less visible, but equally important people - men and women - also on the front lines of prayer and healing energies sent Michael and me during all of this, but I'd have to buy hundreds, maybe thousands of them. So many people have been prayer warriors for us and we have gone so many group prayer lists! I feel strongly that everyone's loving efforts have been an essential part of Michael's recovery. Thank you ALL!

It's not over yet, of course, but with the tummy tube out now, I can really see us going home in a couple of weeks and starting to pick up our lives.

Keep tuning in, folks - I think it all gets better and better from here on out.

Hugs!

Weekend Update: This Just In...

2010-02-07T20:29:00.000-08:00

KAREN CAME FROM SAN DIEGO AND "PUSHED" MICHAEL AROUND!

On the top, Michael's all bundled up, but on the bottom, he's celebrating the warmer weather by wearing gym shorts.
---------------------------------------------------------

Surprises Galore: Saturday...
Therapy sessions on Saturday here runs light and - surprise! - Mr. B. was not signed up for any therapy sessions Saturday. So someone got to sleep a lot (it wasn't Patricia). Yet, there was still time for surprises.

It was not a surprise that sister Karen came in on Amtrak from San Diego late Saturday, and brought with her a gift of several needed and requested wonderful soft, long sleeved T-shirts. Though she did surprise her bro with homemade brownies, which he tremendously enjoyed. Good job all around, Karen!

But it was a surprise that, before she came, Michael had an upset stomach in the morning (which was better than outright nausea) and achy shoulders all day (a new complication of left arm having previously hung heavy and right arm being over used for pulling forward in bed).

Patricia, whose card now reads "Medical Detective," continued her problem-solving for the morning tummy upset - and figured out that Michael's given way too many meds in the morning after breakfast, which, in this case, had way too much sugar (blueberry pancakes with syrup) to be substantial. (If Michael wasn't nauseous or dizzy, he says he would be able to work harder at his Rehab Recovery - and knowing him, I know it's true, which is one of the reasons why I try so hard to solve this.)

A quick conference with the adorable Dr. Ross, an extremely personable doc with the charm and expertise to play one on TV, resulted in at least one of the meds being moved to evening. A Maalox chaser helped Michael, as did a little pain med for the shoulders.

After Karen showed up, Mr. B. began to suffer from what he later dubbed SGS - Severe Grumpiness Syndrome - and actually had to apologize a couple of times for biting our heads off and chewing them soundly.

Another weekend challenge was to count Michael's calories for each meal. Dr. Shapiro (who would play the experienced, irascible older TV doc with a forced bedside manner) said he would remove Michael's stomach tube Monday morn if no canned food was needed all weekend. The goal was 500 calories per meal minimum - and Michael was with the program, eating extra bites of the highest calorie stuff (per printout) and drinking whole fat milk to top it off.

It was no surprise that we successfully caloried Michael up and totally expect that tummy tube to be ga-gone first thing tomorrow morning. (And the extra benefit will be that Michael can eat more now, I'm thinking.)

Sunday, Sunday...
It was a surprise that when I reminded Michael that his dad was coming to visit today, Michael asked me to call him and see if he could come another time, as Michael felt overwhelmed to have both Karen and Bill at the same time (even though he'd said yes earlier). Sometimes, how Michael feels surprises even himself. Thanks for understanding, Bill.

It was a good surprise today that Michael's stomach discomfort was cut by half, with one less pill and the pills taken closer to a breakfast. Dr. Alexander, Medical Detective here!

Yes, it was the Superbowl today and it was on the dining room big TV, but - surprise - Michael was barely interested because - no surprise - it was noisy, crowded and hard to follow. And the TVs in the room don't cut it.

But the really big surprise came later today when an aide asked to talk to me in the hallway while Michael was taking a shower. She introduced me to a blonde lady in a wheelchair with her foot extended and in bandages. Her name was Kim and she had recognized Michael - because they used to be college sweethearts!!!

Poor Kim, who lives in Santa Ynez with her teenage son, had slipped on a freshly polished floor, and broke her ankle in two places.

Later, Kim and Michael and Karen and I got together after dinner. What fun to hear their stories! They were each other's first sweethearts when they were only 18 - and had stayed friends for years. Kim and Karen remembered each other, too.

Okay, someone. What are the odds?

So, it was not a surprise that we had a good Sunday, enjoying Karen's visit, extra naps for Mr. B., extra food for Mr. B. - and ended with the surprise of a double wheelchair hug!

(FONT CRAZINESS DUE TO FAILED EXPERIMENTATION WITH A NEW BUTTON. SIGH! I GIVE UP!)

Bad Start to a Good Day 12 in Rehab

2010-02-06T00:09:00.000-08:00

THIN MAN WALKING!

Yes, I know the picture's blurry. That's because it's an ACTION shot. Yup, Michael is really walking - and here he is trotting down the hallway with Physical Therapist Erin as ballast.

(Have you noticed I discovered the color button? We're both moving along in our way.)
----------------------------------------------------------------------------------
When Michael G. Burgos leaves this Rehab Hospital, do you think he'll be leaving with a walker? No! A 4-legged cane? Nope! Okay, a regular cane? Doubtful!

Our Michael is a-movin'. And at this rate, they think he may just need a person nearby to remind him to lift that leg higher over anything resembling a speed bump...

Nausea Morning, Then Terrific Day. When I got in to the hospital this morning, Michael was having a bad one. He thought it was from anxiety - and I'm sure that was part of it - but I also deduced that he'd been overfed.

I'd had a discussion with the nutritionist Carrie to change the criterion for the need of tube feeding after real eating. It was percentage of food eaten, but I felt it was more accurate to be calories consumed since Michael did not eat large amounts before all this happened. She completely agreed and I thought that was that.

But what I did not realize was that our discussion was not passed on to anyone, because the doctor has to agree and change it in the chart. Sometimes you just don't know the question you're not asking. I assumed her agreement would create a change of orders...but n-o-o-o-o.

So when Michael ate 30% of breakfast, instead of 50%, they supplemented with a can of liquid food thru his tummy tube, making him so full he felt sick. Dammit! I can't tell you how frustrating this is!

Yes, I got the doctor to sign off on it. Yes, it's now official - and they even printed out all the calories of all their meals so I could track it. He only needs to eat 500 calories per meal to skip the tube feeding, which is turning out to be completely doable.

Thank goodness once he did digest breakfast plus a can of food, a giant amount for him, he rallied and actually had a terrific day. (See picture at top!)

Limited Left Eye Vision. They tested Michael's vision with an eye chart. When instructed to read a line of six letters starting at the left, Michael started with the 4th letter. To his limited field of vision in his left eye, that was the beginning of the line.

He'll be tested further with this by someone more expert - and they're teaching him to compensate for it, by turning his head to look left and not trust his peripheral vision.

It could improve, by the way. Or not.

SLO Tribune Story Interview. Michael spoke on the phone today to the reporter from the Trib, the final bit in the story they started with us back in Templeton. AnnMarie, the reporter, wanted to wait until Michael could really speak to her - and I'm so glad. He was his usual intelligent, thoughtful and compassionate self again and I hope the story reflects that. More on that later.

Must sleep now. Must get up early to be there tomorrow for Mr. B.'s breakfast at 8 a.m. I'm not taking any chances...

P.S. Thanks to the warm and wonderful Greg and Jeannie Malick for calling when you were in the area and for understanding about the No Visitor rule still in place. We can't wait to get back to the house your real estate agency sold us!

Good Thursday - No Tubed Food!

2010-02-05T14:29:00.000-08:00

SUSU'S PETALS. Sister Susie brought these pretty tulips when she came to visit earlier this week. (Sorry for all the junk in picture - we don't have a lot of surface room in the room.)
-------------------------------------------------------------
Michael's doing SO much better with the transition to real food! He ate enough to skip the cans via tube - and if he can continue this way, they'll take the tummy tube out Monday. YES!!!

Of course, I'm plying him with snacks and high cal milk and apple juice between meals - with his utter cooperation. His tracking of reality seems better already and he totally gets that eating more is the road to everything.

As you can imagine, the challenge is for him is to eat slowly. After no eating for 50 days, we'd all be wolfing down food and ready to growl at anyone nearby who might take it away. But when he eats too fast, he chokes, coughs and gets full too fast. He's urging me to remind him to slow down - and I am. I'm also going to buy soft cheese and soft bread to ply him with high calorie, low quantity food that will help get to the 500 calories per meal that means he doesn't need the tube meal.

He loved the small square of white cake with the whipped cream frosting that was the dessert at tonight's dinner and wanted another piece back in his room. I asked - with joy in my heart to get
my sweetie seconds - only to discover there was none left.

Then Tom, a sweet volunteer (double for Donald Crisp from the old movies), who was personally responsible for keeping me fed at this facility, heard we wanted another piece, and before we knew it, he'd come up with one - and then another! Michael was intensely happy. (Tom, by the way, is retired from some kind of rocket science where he said he built bombs. He told me he volunteers at Rehab to "make up a bit" for that time in his life. So many stories in the city!

By the way, his white blood cell count is down to 10. He is well!

Although nausea and dizziness appear to still be a part of this journey - due to several factors: the transition from tube feeding to real food; his altered vision; and his natural reaction of anxiety as he becomes more grounded and aware of his situation.

Also, it's hard to get good rest in a hospital. Even a rehab hospital.

BLOG IS MICHAEL-APPROVED! I showed Michael this blog today and he said: "It looks like a lot of fun to read, sweetie. I look forward to reading it thoroughly when I'm out of here."

He also said that when we're sitting in Hawaii recuperating he'll want to ask more questions about what this journey was like for me and for him. He asked if I have pictures of him intubated and on the ventilator - yes - and said he'd like to see them then.

After we're safe and outta here.

Food, GLORIOUS Food!

2010-02-04T12:13:00.000-08:00

YES, AFTER A 50-DAY MOUTH-FAST (and nothing's fast about that), HE GETS TO EAT REAL FOOD! Have Mashed Potatoes And Fish EVER Tasted Better? (NO!)

GOOD FRIEND MICA THOUGHT SHE WAS HALLUCINATING WHEN SHE BUMPED INTO PATRICIA IN THE MARKET IN OJAI!
--------------------------------------------------
Wednesday morning at 8:30 Michael got transported to Cottage Hospital for his third Swallow Study - and this time he PASSED!

PATRICIA VENTING: Not that his speech therapist Elaine had the empathy to tell us that promptly - we had to send out spies to finally get the pronouncement. Sometimes these people forget what it's like to be on this side of the bed. I will definitely need my own kind of therapy when this is over.

So, he got his first real meal in about 50 days (not counting the calories he's gotten thru the tummy tube for the last 21 days). Yes, he enjoyed mashed potatoes and a thin fish fillet with apple juice for lunch and pasta rice and milk with a few bites of lemon meringue pie for dins (they served more than that, but that's what he ate.) And he turned his nose up at the pureed fruit - said "Yuck - it's canned." See how quickly we become choosy!

I watched him eat and I cried.

He patted my hand and said, "I know. I'm your beloved - and since you're Jewish - seeing me eat means everything."

Then I watched him eat and I laughed.

He ate about an eighth of a serving each meal so is still getting the tube feedings, of course, and will until he can consume 50% of the food. But I just beamed watching him eat - and thrilled to be able to say "YES!" Instead of "Not Yet, Darling" when he asked for a glass of water or milk.

Michael not only felt less dizzy after the first few bites, he also says he feels more hopeful now.

MY OUTING. To make my happy day complete, I went to Ventura to my former hairdresser and got my hair done (this experience has aged me enough - I don't need to show my silvers to prove it!).

Then I ran to Ojai to pick up my vitamin powder (which I normally have to ship to the Central Coast) in my continuing attempt to keep myself healthy.

I popped into the market to buy Michael his fav yogurt and razors, when our friend Mica sidles up to me looking like she was either going to pinch me or herself to see if she was hallucinating. It was true serendipity! As we exited, she desperately wanted to send Michael a gift, so she searched her grocery bag and offered me her box of fresh spinach - but I talked her into letting me take her photo instead.

Felt strange to be gone all afternoon - but I was back in time to watch the gloriousness of Michael getting dinner.

Isn't it easy to take the act of swallowing for granted? Not any more.

Sent from my Verizon Wireless BlackBerry

Tuesday (Day 9): Revisiting Visiting (from Family)

2010-02-03T09:32:00.000-08:00

VISITING SISTER SUSIE, DAD BILL & STEPMOM SUSAN (not pictured) (She and I tend to be on the other side of the camera!)

SUSIE AND BRO IN THE THERAPY ROOM

MR. B. TAKING A SHORT (BUT MEANINGFUL) WALK WITH DORIS
--------------------------------------------------------------
Michael felt ready to try family visits today. Although he enjoyed seeing his dad, step mom Susan and sister Susie, he felt overwhelmed by so many people at once and we now know to ask for one visitor at a time. Family only for a while.

He was nauseous again in the morning, darn it! I keep thinking I've problem-solved it when it comes back.

Then one of the nurses said nausea and dizziness is a somewhat a consistent part of this journey. Oh. Well, that would explain it - but I'm still glad I had them change the first antibiotic...

And in spite of the nausea, Michael continues to amaze. Pushy Doris the occupational therapist (OC), had him finish his last session with her by WALKING from his doorway to his bed! Boy, that made my day and same for Bill, Susan and Susie.

As for me, I left Michael at 9 pm and got a more solid night's sleep. Had to.

And my sweetie told me to - 'cause he's got my back.

Sent from my Verizon Wireless BlackBerry

Restful 1st Sunday: Day 7 Rehab

2010-02-02T11:21:00.000-08:00

IS THAT MICHAEL BURGOS IN THOSE FOSTER GRANTS?

STANDING STRONG WITH JOSE AS BACKUP.
-----------------------------------------------------
Wow, Michael is so much stronger and more lucid! He's made incredible progress!

Sunday, the only day of no therapy, brought back his Marco Polo spirit, and twice we went on explores. He enjoyed the two inner courtyards (being well-bundled), meeting weekend staff, and seeing all the nooks and crannies of the place (I started to wonder if he was planning his escape...)

HEIGHTENED OR ALTERED SENSE OF SMELL. Michael has developed an acute sense of smell and not only thinks everyone constantly has bad breath (including yours truly), but smells smoke where there is none I can detect.

And we both laughed in defeat when he even found the scent of Altoids on my breath overwhelming! The therapist says it happens occasionally with stroke victims and they'll test it later.

HANGING OUT. Late afternoon, Michael invited me up on the bed and we had a "jama" party, chatting about looking forward to being in our King size bed in Paso and then recuperating in Hawaii.

When prompted, he DID remember some of the events in Ojai before he got sick. And he knows this blog is available for him to look at later if he wants to fill in the gaps.

But it feels like I've got my sweetie back SO much more!
This is better.

Sent from my Verizon Wireless BlackBerry

Michael's Walking into the 2nd Week of Rehab!

2010-02-02T00:48:00.000-08:00

One of the pictures above is Michael working the hand petal machine (work that left hand!)

One is Michael sleeping in the warm snuggly blanket I got him (rest, Sweetie, rest!).

And the other is step up training with Erin the Physical Therapist (lift that foot!).
-----------------------------------------
Yup, he's walking - or at least beginning to. (Maybe at this rate we won't be here another three weeks????)

Looking forward to Wed morning's swallow test. Michael and I are both craving pancakes!

He has gained about a pound and a half - so at least we know the food got calculated correctly.

And I got cleared today for helping Michael in and out of the wheelchair, which gets easier daily with his growing mobility and strength.

(Sorry, Bill, I didn't call you today - the day got away from me.)

Sent from my Verizon Wireless BlackBerry

Rehab Saturday Day 6

2010-01-31T09:35:00.000-08:00

(Top) HAPPY GRAN WITH ONE BIG 4-MONTH OLD!
(Bottom) GRAN, LIAM, PAPA MIKE AND MAMA NICOLE IN A REAL RESTAURANT IN SANTA BARBARA.
-------------------------------------------------------------------------
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

2010-01-29T21:30:00.000-08:00

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!

2010-01-29T12:44:00.000-08:00

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

2010-01-28T20:53:00.001-08:00

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.

Rehab Day 3: Still Sleepy! And Social!

2010-01-27T19:40:00.001-08:00

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!)
---------------------------------------------------------------------

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)

2010-01-27T01:05:00.000-08:00

DRESSED, SEAT BELTED AND READY TO ROLL AT REHAB! (See new "Get Well" Wall behind him)
---------------------------------------------------------------------------------------------
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)

2010-01-25T21:30:00.000-08:00

"I'M READY FOR REHAB!!"
-----------------------------------------------
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.
----------------------------------------------------------------------------------------
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?

2010-01-24T20:05:00.000-08:00

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.

-----------------------------------------------------------------
PICTURE ON RIGHT: I CAUGHT A SWOOPING ANGEL IN THE HOSPITAL PARKING LOT AS I WAS LEAVING.
-----------------------------------------------------------------

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)

2010-01-23T15:51:00.000-08:00

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!
---------------------------------------------

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

2010-01-21T22:42:00.000-08:00

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...
----------------------------------------------------------------------------------

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...

2010-01-20T23:24:00.000-08:00

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!
-----------------------------------------------------------------------------------------------

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!

2010-01-20T11:42:00.000-08:00

Mr. B. Watching Basketball From the CHAIR!!
-----------------------------------------------
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...

2010-01-19T09:48:00.000-08:00

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!
-----------------------------------------------

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

2010-01-18T14:37:00.000-08:00

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

2010-01-18T12:25:00.001-08:00

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.

-------------------------------------------------------------------------------------------------
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!!

Crazy Miracles! PART 2 with PICTURES

2010-01-15T03:43:00.000-08:00

AMANDA VAN HUSS encourages a tearful Patricia while Amanda's husband, cancer survivor CHRIS VAN HUSS, who also had a 6-week ICU stay with Swine Flu, Double Pneumonia & Stroke, encourages Michael he can fully recover: Chris did!

--------------------------------------------------

When Chris and Amanda walked into our room in the ICU, it was a magic moment. We had a few nurses and respiratory people who piled in, as well as sister Susie and our friend Leslie, and the room quickly took on a party atmosphere.

Chris and Amanda told Michael all the things Chris had gone through - including coding and being in a coma - which, thank God, we managed to skip. Chris showed Michael the trach scar on his neck and moved the arm that had to come back with physical therapy. To look at Chris, a big strapping guy, a Templeton-based welder with two small children, you'd never know what he and his wife had gone through.

Michael was all grins throughout and I just leaked tears and asked a million questions. When Chris had gotten his speech and brains back, he and Amanda had compared notes and realized that he often tried to communicate something that seemed perfect in his mind, but didn't come out that way when he tried to move his lips or gesture. He also couldn't write on a grease board or point to pictures or words, even tho he could see them. Now we knew how Michael felt.

During all the heavenly havoc, Michael was gesturing wildly to me. I knew instantly he wanted me to give Chris and Amanda one of our books, which he confirmed with a nod. Then Michael imitated writing. He wanted me to dedicate it to them. I grabbed our felt pen and one of the books I always kept in the room to give to all who came our way (I think we've inundated the hospital with The Book of Comforts now!).

I began writing. A few minutes later, Michael was wildly trying to get my attention, and we had a funny moment when I said to him, "Did you want me to dedicate this to them?" He nodded. "Then shut up!" I said. He held up both hands in mock surrender and we all burst into laughter. (It felt so good to banter with my sweetheart - so blessedly normal.)

We had Chris sign Michael's black high top tennis shoes (used to keep his feet from getting "foot-drop," a shortened Achilles tendon from being in bed too much). They turned to leave and once more Michael gestured wildly, pointing at Chris. Everyone looked at me for interpretation (I speak Michael). "You want Chris to come back over to you?" He nodded, then pointed straight up. "You want him to pray with you?" He nodded.

"Hey, Chris," I asked. "You a prayin' man?"

Chris and Amanda shared a look. "We are now!" came the answer.

Chris held Michael's hand and wasn't sure how to pray out loud, so I led a prayer and the whole room stilled as we all joined together in gratitude to God for Chris and Amanda's miracle timing and all their encouragement. When I finished, Michael indicated Chris. "Say something," I encouraged him.

"I don't know what to say," he said shyly.

"Just say 'God bless you, Michael,'" I suggested.

"God bless you, Michael," Chris said, "and may you have a complete recovery very soon."

We all said AMEN and there were hugs all around. When they left, and the room cleared, we felt pleasantly exhausted from all the emotion...and very, very grateful and filled with the sweetness of new hope and our very own miracle.

(If anyone wants to glance at the blog Amanda started, it's at chrisvanhuss.blogspot.com.)

Crazy Miracles! PART 1 with PICTURE

2010-01-14T16:18:00.000-08:00

"COME VISIT ME," says Michael B!
----------------------------------------------------------
Doesn't Mr. B. look just like himself? Only with a professorial beard?

Oh, yeah - and a tracheostomy.

That's okay - we like the trach! With the tube out of his mouth, everything's getting better faster, just as they said it would. You know what he did as soon as they released his restrained hand (which would have otherwise pulled that nasty mouth tube out)?

He scratched his nose vigorously! And then he rubbed his eyes like a child with a fisted hand. And then he ran his hand over the top of his head. I hadn't thought about it before: all the constant comfort that comes from being able to touch your own face.

These few days have been filled with "crazy miracles," as his sister Susie put it. First, Michael's rebounding strength, in spite of the new torture and frustration of not being able to talk (which comes later, when he's safe for a different insert in the trach). After all the drugs, he constantly moves his lips, carrying on a constant silent monologue, but doesn't yet have the presence of mind to play a consistent game of charades or over-enunciate so I can read his lips. I have to slow him down, and try to get him give me a concept first.

Since I have so many points of reference from our life, and because of our love bond - plus it doesn't hurt that I'm into puzzles and Sudoku - sometimes I can make an intuitive leap and come up with what he's trying to communicate with very few clues. When I do, it's incredibly gratifying for both of us.

One of our crazy miracles was when PT (Physical Therapy) began Wednesday, and Michael totally grooved on it! He's been working with a personal trainer at the gym for the last 6 months, so he's psychologically prepped for following their instructions and putting forth a hard effort. Honestly, we don't have to worry about his left leg/arm - he can move them with a few tricks from PT and will do so better and better given have a chance.

It was so cute. After PT left, Michael wouldn't stop. He just kept exercising his right leg and arm. And later that day, he wanted Leslie and I to work his legs again like PT did.

Okay, now I have to tell you about our BIGGEST miracle. Through our "magic" language, Michael had asked me to promise him he would get well. Susie and I felt he needed lots of reassurance he wouldn't be connected to machines forever.

Well, the nurses had all been telling us for weeks about a guy who had been in here before Michael for 6 weeks who had all the same things he did: Cancer survivor who didn't get a Swine Flu shot and then got H1N1, Double Pneumonia, ARDS (completely congested lungs), and a Stroke. Only this guy had a heart situation, diabetes and had coded. And he got well, moved on to a month of rehab, and then back to his full life.

So I thought it might encourage Michael if the guy might be willing to come in and talk to him. I asked the nurses if they would call this fella. Well, just as they were looking for his phone number, HE AND HIS WIFE WALKED IN!!!! They had come to the hospital for some post tests and came up to the ICU to say hi to the nurses. Coincidence? Sorry. With all the powerful prayers going up, I'm going with God's perfect timing.

(Hey, it's 9 pm - Michael has clearly indicated he's ready to go to sleep and wants me to go home and get some sleep. So I'm closing down the laptop and I'll resume at home. Please check back later when I finish this - sorry to leave you on a cliffhanger...but check in later for the juicy details!)

(Okay, now it's 2:45, and I'm finally home. Michael started on tummy tube food and got a blood transfusion and began feeling odd, so I stuck around until I knew he was safe and we could finally get him to sleep. You'll have to wait on Part II - but I'll get there!)

FINALLY! Some Good News!

2010-01-12T21:01:00.000-08:00

Hi, loved ones.

This morning the dtr did another Bronoscopy (camera and suction down ventilator tube) and was able to clear out three very large, probably old clots of blood and mucus from Mr. B.'s lungs - and what do you know? He could then clearly see the tell-tale lesion was small and out of the way and - not a problem! Turned out these clots were what was blocking his air tube - but the last Bronoscopy looked so confusing, they thought, well, a lot of things.

So the need to get a stint and go to another facility IS OVER! We're back to being here and trying to heal and go forward.

In the name of that, he was to get out the nasty life-saving tube and get a Tracheostomy at 2 today - got bumped to 5 due to an emergency surgery on someone else (poor guy/gal). I kept feeling like a big fat liar because I kept telling Michael "soon, sweetie, soon - be patient."

Now ding-dong the deed is done and I held his hand all the way to the double surgery doors. He was alert and understood that I was telling him he was in good hands with people who had done this gazillions of times, and that it would make his healing time easier. His calm nod made me feel a gazillion times better and I kissed his forehead, told him I loved him and sent him off.

It went well and he woke up shortly after - still annoyed to have one more damn tube down his throat. They had to leave the feeding tube in to make sure he wouldn't be nauseous after the anesthesia. I soothed him asleep with a cool wet washcloth on his forehead and a rhythmic chant of "You won't remember this...you won't remember this." They'll be taking it out when he wakes up (an hour?). Tomorrow, in a quick procedure here in the room, they put a tube directly into the tummy and he'll be fed that way until he can safely eat again.

He won't be able to talk yet - they use a trach tube at first that protects the airway from secretions. But when they're sure he's ready (different for all), they just pop the tube out and switch it for a different type that allows him to get air thru his vocal cords. But he's already skillful at communicating with his eyebrows, head nods, facial expressions, right hand squeezes and gestures, and even his right leg and foot pointing and moving.

We finally got a break!

Interesting note about my emotional response when he was suffering the Apnea breathing mask after the panic attack and hating it: Sunday night 2 am, after watching him suffer and after skipping sleep for about two nights, I hit the wall and was shaking with cold and having trouble feeling my hands and feet and feeling very peculiar. I'm sure my blood pressure dropped or surged - that's why I had to go home, where I continued to feel terrible. Food was repulsive, sleep didn't make the weird feeling go away, even tho Shelene and Russ and Leslie took great care of me. I was afraid I was not going to be able to hold tough through the next chapter if all that continued.

But when I got back to the ICU and saw he was awake, tubed again, and needed me, I guess adrenalin kicked in - and that icky feeling left me. I ate gratefully - if not ravenously - and felt strong again.

Last night I did get home around 1:30 am, took a 40 minute hot shower, half a valium (compliments of Michael, it's always around like aspirin) and slept until 7:30 and felt SO much more normal. And now, better than adrenalin, hope surges through me at this latest development.

I even got to my chiropractor (who's across from the hospital) and got a much needed adjustment, some Vitamin B for stress and a loving hug from Sara at the desk. Also, a quick lesson on how to rub Michael's ears, hands and feet to deliver energy to his body. And I picked up some lavender cream and essence to start some aromatherapy. (No reason not to use many healing modalities; traditional medicine is not the only way.)

Having Michael's sister Susie with me has been good, too. Hospitals make her turn pale, so it's double brave of her to be here - and so good to talk with her more. This whole journey has had a hidden blessing of drawing Michael's family and me and my family and friends into a tighter unit of support and love. Hey, Michael's sisters have gotten to spend some time with my wonderful brother Russ - and their paths have only crossed a handful of times in ten years!

Closing with more funny stuff Michael said while tube was out last time and he was not tracking reality:

--"I'm going to go out, sweetie; you stay here."

--After the swallow lady, testing his ability to swallow soft food, gave him a little taste of something creamy and white, "That's ex-QUIS-ite!!!"

--"Have you brushed your teeth? Your breath is bad." (It wasn't - I actually had just brushed my teeth with one of those new travel picks.) I popped in some peppermint gum and chewed it near his face and he got a vicarious thrill. "That's better, Sweetie!"

--"I appreciate everything you're doing, sweetie. But I need a little alone time now." (ME, GRATEFULLY: "Sure! I'll go over there and take a nap!" FIVE MINUTES LATER, HIM: "Sweetie?" SIGH! SO MUCH FOR ALONE TIME.

Closing note: I tried to check off a box on this blog that said to allow you to comment whether you were a member or not - so I hope the process is easier. Please try again if you got discouraged when it asked you to create a sign-in. Your comments mean a lot to us - and I'll be reading them to him soon...

Love,
Michael's Big Fat Loving Liar

Still In Templeton/Tracheostomy Tomorrow

2010-01-11T21:02:00.000-08:00

Well, after conflicting stories and mixed up info, it turns out the surgeon in Stanford said yes ... then no. No reason offered. Now waiting to hear if UCSF will do the stint procedure. Dr. encouraged us to research other places in CA and Karen has done so beautifully and I've passed the info on to the doctor in case SF says no, too. UCSD looks awfully good, and we have a lead on a special doctor at UCLA/Santa Monica.

I was horrified to come back to the hospital and find Michael wide-eyed and wide-awake while tubed. I'd been assured they would keep him out. Family has concerns about all this sedation and its effect. Me, too. But they switched him to a better drug that Karen and I researched that has a 5 day max.

Considering that twice I had to wrestle his arm away from pulling out the tube - which makes me feel wretched, and makes his heart rate and blood pressure soar - keeping him in twilight until tomorrow afternoon's trachiostomy is the better choice. I'm stayed with him tonight in my purloined cot in case he came up, but I love the night nurse and trust she'll keep him out, so I just left at 1 am to get some rest myself at home.

Had a total Terms of Endearment moment when I first got to the room and Dad/Bill and Dr. Ramnath got into it about Michael's care. Michael was pulling on my hand desperately and frantically trying to pretzel forward to reach the tube, while they were talking over each other. I finally yelled. "HEY!" They turned and looked at me. "Get him some fucking sedation! NOW!"

My outburst was effective. And Dr. R. (whom I'm sure has now dubbed me a hysterical female, as though I care) rushed Bill and I into a little conference room to finish the conversation, leaving sister Susie behind with Michael. (Susie's sleeping at our house, as we thought she and I were driving up north and may still be.)

We proceeded to hash out what has gone down with Michael, and the doctor clearly understood that Bill felt there had been some bad decisions made. The Dr. defended the decisions and we're stuck with the status quo, which is, as I understand it:

Michael was improving on all fronts after the tube was out. But they had taken a biopsy of a tumor/lesion in his lungs when they had done a Bronoscopy (camera down the tube), which was benign, but they keep saying they've seen that change. The lesion began to bleed (blood thinner had begun, which might have played a part) and swell and puffed into the lower airway on the left.

That's why Michael didn't feel well and then couldn't breathe and had a panic attack that brought fluid into his lungs from his heart beating so fast. That led us to the Apnea mask, which was driving the liquid out of his lungs, but became the new torture. Then he began not to do well on keeping oxygen in his lungs and they put the breathing tube back in. Oxygen got worse because the airway was totally obstructed. They did another Bronoscopy. That pushed the lesion out of the airway. His airway is clear again and his lungs are recovering already, but they fear that the lesion will puff up again. Rather than take it out, which is intense surgery he's not ready for, they want to put a stint (tube) in it with laparoscopy, so Michael's lungs can just heal - and then take the lesion out down the line (I can't even think about that).

They waited today to see if UCSF would say yes, because then they'd transport him and do the trach and stint at one time rather than put him thru two procedures separately. Since we don't know yet, they've scheduled the Trach for tomorrow afternoon, and will keep him in twilight until then (he comes up from time to time - but they're keeping him from getting agitated, thank God).

So...do we end up in UCSF tomorrow and postpone the Trach until then...or do the Trach at Twin Cities and then transport somewhere else sometime this week? Will it be SF or SD or LA - or someplace else?

Tune in tomorrow, folks, because I have no idea how it will go down. And for God sakes, keep praying.

Mr. B. Being Flown to Stanford in SF for Procedure

2010-01-11T01:40:00.000-08:00

Stanford said yes to doing the procedure on our Michael's lung lesion - and he will be heliocoptered there as soon as they have a bed available - could be Monday morning or even a few days later. But he is knocked out and safe in la-la land, stable - and even with improved blood gases (oxygen to the lung).

His sister Susie and dad Bill are driving up here in Paso Robles early a.m., so Bill can see Michael before he's airlifted. Then Susie and I will drive up to Stanford in my car together, for which I'm grateful, as I'm a little unsteady at this point. They may keep Michael up there or do the procedure and send him right back to Twin Cities Hospital, so we have to be prepared to stay an indefinite amount of time. (Also, grateful to my brother Russ who has taken root in the house, saving me from fetching mail, feeding cat, while taking care of me when I'm home.)

Special thanks also to our friends, Leslie and Rory, who spent time with Michael when he was awake and delirious (he told them fantastic stories) and brought me warm El Pollo Loco. I sucked the meat off that drumstick like a hungry pirahana, I was so hungry for protein! I AM trying to take care of myself - I'm just losing the battle a bit.

And lovely Leslie came over Sunday night with her massage table and gave me a much needed massage. And then Shelene, who stroked my hair and helped me pack, made me promise I'd go to sleep afterwards - which I did for a little. As you can see, I'm up again, restless, paying bills, printing mapquest and writing here. Now I'll try to sleep again.

On a lighter note, I must tell this hilarious story about Michael. Thursday, when the tube had come out and Michael had rested, Dr. Ramnath (from India originally) came in and said, "Do you know where you are?"

Michael, bless his heart, looked at him for a moment and then said, with complete sincerity, "A third-world country?"

Oh, my God! I almost fell down! The doctor didn't even crack a smile, as he, frankly, has no discernible sense of humor. But I proceeded to tell the story to the nurses all day, and they laughed heartily.

Keep praying...

Michael is Worse, Condition More Complicated

2010-01-10T13:13:00.000-08:00

Michael's condition has had a major setback and he is in the ICU on the ventilator again. Thank God, he is totally sedated.

This has been a nightmare. My only comfort, besides the support of all you wonderful family and friends who love us, is that they keep assuring me he will have no memory of any of this - if we get through this.

I can't give you the daily details of this journey since the last entry - they just go on and on and change constantly.

But I will say that his lungs took a step backwards. They have discovered a rare lesion (growth) in his lower airway that is obstructing his left lung that the doctor said could be an early stage of cancer - though it currently tested benign - and this whole thing could be a strange Godsend that it got discovered and can be removed. But first they just want to open his airway with a laser and/or a stint.

They are conferring with UCSF or Stanford, who are the most experienced at doing this. I'm waiting to hear if they will ambulance him there, open his airway and give him a tracheostomy for the ventilator, which patients recover better from than mouth tube ventilation. The doctor says he has every reason to believe Michael could return to his former life.

He has had a small stroke, which is the least of all this, as he has already shown he can move his left leg and arm, so they can come back with physical therapy. And his left eye vision has a reduced field but that's all.

He also has encephalopathy, water in his brain from the H1N1 , says one doctor - tho they've been telling me all along it was from the 2 weeks on sedation. (It is VERY hard and frustrating to get details that are consistent and in English from these doctors and there have been confusing misunderstandings to add to the stress.

But the brain condition will heal. While Michael's been awake and improving these former two nights and days, it's been like he's on a high drug trip, hallucination. Sometimes it can become a bad trip and I've had to fight 3 levels of nursing staff to get the right to stay with him all night on the first floor, where he was inappropriately released yesterday (day before?) , instead of the 2nd floor Observatory (DOU) ward where he could have more attention. Stress I didn't need. But they would have had to drag me away with four guards to get me to leave - and I made them reassess him and take him to the DOU.

But I got some sweet time with my darling, where I talked him through the night, steering him away from seeing knives and thinking he was out of bed, and going over all the memories of our ten years of traveling together. He was so sweet and loving, holding my hand, caressing my face and hair, and remembering all the B&B's and all the adventures in all the cities we've been. I read him your emails, showed him your cards - and he always said loving things in response and appreciation. Whatever happens I will cherish this odd and special time I've had with him.

Ironically, the Swine Flu is finally out of his body and he's off "Isolation" with us all having to wear masks, gloves, gown. Now we're left with its path of devastation.

He can come through this - or he might choose to take his leave of us. Whatever he chooses, we must be at peace with it - I am. Michael's never been afraid of the life that comes next. But he also has survived cancer twice and he also wanted to go the hospital to get better.

Please keep praying for him.

Love,
Patricia

first Night no Tube: Blackberry Blog Tryout

2010-01-07T22:44:00.000-08:00

OK - watch my thumbs fly!

Mr B is Very disoriented,definitely in an altered reality. He pointed to a nearby rolling table and said (fairly clearly_ "What's for dinner?" He then told me there was bread and cheese on the table! Yes, he's hungry - and while that's so healthy and wonderful, we can't give him food or water yet because he can barely swallow and could aspirate or choke. We do have a wet, cold swab that comforts him. He also wanted to "send Patricia to go get dinner --- I'll buy" The nurse and I laughed in surprise and then I was filled with joy as I realized it was the first time in his incoherant mutterings that he'd said my name.

I'll go fetch dinner soon, my darling...soon.

They switched him to the 2 nose prong oxygen mask, the face mask was so uncomfortable. Everything's slowly getting better. We begin several days of accessment - he's still in danger of being tubed again if we hit a breathing set-back.

It's all about him not getting agitated and short of breath.

At my request, they gave him a small amt of anti-anxiety med to calm him but his drug tolerence is so high now, it doesn't appear to do much. I darkened the room and put Liz Story piano sleep music on. Ahhh, now his eyes have closed and his breathing gentled.

Tomorrow they access his swallowing and speech. There may be food and conversatipn ahead...

I want to thank you all for your emails and calls - please know I can't get back to everybody specifically right now, but your contact and encouragement means a lot to me. I even got to read some of your emails to Michael the other day when he was tubed and he nodded at each one until he dropped off.

Night-night.

Michael Burgos Recovery: Day 15 ICU

2010-01-07T20:09:00.000-08:00

What a day of dizzying ups and disturbing downs. Michael's free of the tube and displaying confusion,anger and frustration, Me? I'm utterly emotionally spent.

Michael's tube came out at 10 a.m. THANK GOD, and now it's a whole new set of challenges. His frustration at not being able to talk clearly or be understood matches my own at not being able to understand him. He's still fuzzy-brained, of course, and it's confusing to know how much he gets and doesn't get.

He beckoned me to come closer and then tried to rip off my protective mask with great anger, which was startling and upsetting. I tried to explain why we have to wear the blue paper gowns and gloves and masks, but I had to walk away and compose myself and let him be.

Dr. Prier, the Infectious Diseases doctor - who we adore - says if Michael doesn't have a temp of more than 100 over the next 24 hours, we may be able to dispense with the protective gear, tho the stuff Michael coughs up that is suctioned is still active with Swine Flu.

Leslie came and sat with me while the kidney dialysis started up, and since the nice guy doing it was going to sit there for 3 hours, I took the opportunity to come home and sleep. I woke up after two blissful, dark, beep-and buzzer-free hours, and it took me a full minute to remember where I was, despite being held down by a small black cat (a very attentive Valentine).

Leslie went back at 6 pm and let me stay home a little more. I'm about to go back now, but wanted to start this blog spot so I can post daily and from my Blackberry and anybody can check it out (it's hard to attach 25 email addresses to each email I send. I'm so grateful so many people are following our saga and holding us both up in prayer and this will enable me to continue the reports without so much labor).

Please feel free to add your comments for all to see. They are so welcome, as are your continuing prayers and healing energy.

Gotta go - more later. Love you all.
PATRICIA!