Bad Start to a Good Day 12 in Rehab

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.)
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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!

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.)
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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!

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!
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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)

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
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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

IS THAT MICHAEL BURGOS IN THOSE FOSTER GRANTS?

STANDING STRONG WITH JOSE AS BACKUP.
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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!

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!).
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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

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

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

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

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

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

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

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

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

Tomorrow: No therapy - all rest.

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

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

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

"Okay." He hung up.

Broke my heart.