Dreams & Rude Awakenings

Last night, I heard a noise from the front porch and I got up and went into the living room, that's when I saw that Bob's hospital bed was empty.

Empty.

Quickly, I looked around and then I saw him. At the front door. Standing there with his back to me. I couldn't believe my eyes, I mean, oh my god, he was standing up! On his own! This is nothing short of a miracle.

Breathlessly, I ran toward him and that's when----I woke up.*

I woke up to shrill beep-beep-beep of the feeding pump alarm. I shot out of bed, because that alarm can mean only one thing in the middle of the night: Bob's tube is clogged. But the alarm was just signaling that the feed bag was empty. So I shut it off and, confused and jangled, I crawled back into bed to gather my wits. And then I noticed the time. Crap. It was already 7:30 a.m.

Bob started calling to me from his bed. His pad was wet and he wanted it changed. So I dragged myself up again and changed his pad, then dumped his night urinal and finally trudged myself into the bathroom. The cats trailed after me like two homeless panhandlers. One by one, they leapt into the clawfoot bathtub and sat there, side by side, staring at me with bright blue eyes. Which could only mean one thing. Their food bowls were empty. And Boomer was right behind them, with that whistling whine in his nose, because, you know Mom, we are late for our morning walk. Then I heard the garbage truck rumbling down the street and oh shit, I forgot to take the garbage out last night and when your spouse wears Depends, this is an important thing to do because one doesn't want that garbage sitting around too long. So I flew out of the bathroom, out the house and into the yard and grabbed the garbage and pulled it to the curb, just in the nick of time, and still wearing my pajamas went back inside.

Where Bob was calling for me because he wanted the other urinal. He has two urinals, the one for night is the spillproof urinal, which holds up to a liter of urine so that he doesn't have to wake me to empty it. And I tell him that I still have to walk the dog and I'll give him the other urinal when I return. And I go back into the bathroom to dress, then feed the cats and Boomer is stuck to me like velcro, because, you know, he really really has to go outside, but I still have to disconnect the feeding pump and flush Bob's tube with water and Bob is still fussing about the urinal and I finally grab the damn daytime urinal and toss it to him as I head for the leash. The urinal hits Bob on the leg and he screams. I mean, he really screams bloody murder, as if I had shot him instead of tossed a plastic urinal. I tell him not to be ridiculous, it's only a plastic urinal and I didn't mean to hurt him, and it couldn't hurt that bad but he starts crying and the dog is still whining and goodness, I just have to get out of the house.

Thus begins another day....

As I was walking the dog, I thought about that dream. Bob standing at the door. And I realize, you know, I can't remember the last time I've had a dream. It seems as if that was the first dream I've had in about a year. It's as if I don't dream anymore. Or maybe I just don't remember my dreams. Which is weird.

But, anyway, there are two good things to report from the Pink House today and one of them is that I have been getting some sleep. I think an entire seven days have passed where Bob has not woke me up in the middle of the night to change his bed. And I am quite grateful for that.

And yesterday, another new record. Thirteen times walking the rail. It looks like Bob's on a roll!


*Yeah, I know, this is a really lame junior high school literary device, but heck, this isn't fiction.

And He Laughed

Back in June, when Bob had his Swallow Video Test, the Speech/Swallow Therapist showed me the rather grainy film and pointed to a spot in Bob's throat and said, "See that, right there? It's not moving. That's his epiglottis and it should be moving. But it's paralyzed. And that's the reason everything is going down the wrong pipe." And, of course, a discussion followed with me asking what one can do about this and she really having no clue. After that, the ST refused to give Bob anything to eat for swallow practice and sternly warned me not to give him anything at home or there would be dire results, possibly even death, then discharged him and well, you know that story.

Afterwards, I did two things. I researched "epiglottis" as I really didn't know what it was or what it did, and I took Bob to see his Ear, Nose, Throat doctor (aka Dr. Doom) for a second opinion. Dr. Doom concurred that the swallow test results were dismal and medically he could not advise me to let Bob eat anything for swallow practice because it was indeed dangerous, however, off the record, he said if he were me, he'd just "wing it", keep up the swallow practice at home and see what happens because the alternative is never being able to eat or drink and he thought, personally, it was worth the risk.  And that's what we've been doing with a cup of pudding or mashed potatoes every day since. Against all medical advice....

Now the epiglottis (and bear with me here) is a small, thin muscle in the vocal cords. It is sometimes described as being "leaflike" and it's big purpose is to protect the windpipe (trachea) when one is swallowing. It operates like a flap, if you will, covering the windpipe that so that food and liquids flow over it and into the esophagus and down into the stomach. When you are not swallowing, the epiglottis is open so that you can breathe. It has one other interesting feature. It is the epiglottis which makes you laugh.

You know that noise one makes when one laughs? That "ho ho ho, hee hee, ha ha" from the throat? That chuckling, chortling, giggling, cackling that you sometimes can't control no matter how hard you try or how inappropriate it is at the moment? That's the sound of your epiglottis doing a happy dance, flapping back and forth over your windpipe.

When I learned this odd little fact, I remembering thinking that if that's the case, then Bob would not be able to laugh because his epiglottis was paralyzed. At first, I thought this was rather absurd, because, of course, Bob laughs--doesn't he? I mean he laughs "with his eyes", he smiles and even says "ha ha!" and "hee hee!" but then, after thinking about it, I was unsure if he really could laugh--you know, chortle? chuckle? giggle? So I began to study him when he "laughed" and found it was true. Bob couldn't laugh. Which is really weird, when you think about it.

Yesterday, we played Scrabble. Bob had just finished drawing new tiles and he said, "Crap." I said, "What?" and he showed me his tiles which were pretty much all consonants, no vowels. And I said, "Well, you think that's bad, look at this," and I showed him my tiles which were O O O O E E I.

And he laughed.

I mean, he really laughed.

He chuckled. Giggled, even. Honest to God, I almost fell off my chair.

It was the first time I've heard him laugh this year.

And perhaps this means that our "dangerous" swallow practice is working.....? Oh my. It would certainly be nice to have "the last laugh" on this one.

Baby Steps

I know I haven't been blogging as often these past few weeks, but life has been rather frustrating, all around. More and more, the phone rings from creditors to the point where I cannot answer the phone without fear (the hospital, alone, wants $27,000+!) and Bob's bladder problems have come back with a vengeance and his progress all around seems so slow (if any, at all) that I have been feeling a bit overwhelmed by all it. It often feels like the proverbial clock ticking here (Bob's one year stroke anniversary is next month!) and I know, in my heart, it is not true but I keep hearing all those doctors who told me that "the first year makes the difference" and after that, he's pretty much doomed and wont progress any further.

I know that's not true. But one can't help worrying about it.

So there is a weight on my shoulders as I (as Bob's PT/OT/ST) bear much of the responsibility here. So I'm often worrying about what am I doing wrong? or what can I do differently with his therapy? and how can I jump-start, kick-start, beat-him-into-submission so that he will jump out of that bed and dance around the room?!

OK. I am exaggerating here. But you get the drift. These things weigh heavily on my mind. And then there's the PT at Rehab (the female one) who told me that Bob wouldn't be allowed back at Rehab until he can stand up and walk without having to hold onto the rail. Which brings two other things to mind, i.e.: if he can do that, what the heck does he need Rehab for? and How the hell are we going to achieve this, at home?

But I titled this post "Baby Steps" because he has taken some "baby steps" this past month and I wanted to outline them here (mostly to make me feel better!):

1. Leg Movement: He's moving his right leg from side-to-side much better, to the point where he can now adjust it when he's in bed without calling me for help.

2. Walking: He's back up to 9 trips daily on the hallway rail. That is his old "record" but he hasn't been able to do that since before "the fall in the hall".

3. Transferring: He is able to get from the bed to the wheelchair without the slide board. He just scoots over--still can't stand up, but he is using more muscles this way. Still needs the slide board to get back into bed because that's more of an uphill climb.

4. He's shaving himself! With an electric razor. This is the first time he has taken in interest in his looks, which I think is a very good sign and a move toward some independence. And boy, I had to push him to get him to do this the first time, but now he does it willingly and happily.

5. He's gained all his weight back (and then some!) His primary care doc just cut back his Jevity prescription so that means one less feeding I have to do per day. A relief. Plus Bob wants it cut back even further as he is worried about gaining weight--another good sign because, again, it means he cares about his appearance. Even though I tell him he's just gained a little "buddha belly" and I think it's cute.

6. His Scrabble game is improving. So that means his reading comprehension is improving. Just the other day, he began to pronounce the words out loud as he played them (even if the words themselves were wrong).  Example: he spelled out the word "fita" (which is not a word, at least in the "official Scrabble dictionary") but he pronounced the syllables perfectly and I think he was aiming for "feta" as in the cheese, so he was very close. And I'll take credit for this one. Scrabble Therapy was my idea all along.

7. I think possibly, just possibly, he is speaking a little better. Possibly. I will have to take a video of him and compare to be sure. But I think this just may be the case.....

Well, there. I do feel a bit better now.

Update: As of 4:30 p.m. this afternoon, Bob set a new record for walking the rail in the hall: 10 times! Whoo hoo!

The Cartoonist He Was

Thought I'd lighten up the mood here. This is another one of Bob's cartoons and one of my favorites.

The Witness Protection Program
undergoes another budget cut.

Walking at Daybreak

It's daybreak and I'm walking with Boomer a few blocks from home. The sky is just beginning to turn from black to gray when I notice this house. A simple house. A common kind of house built in the 1940's. Single story. Gabled foyer with an arched oak front door with a high little window. The outside light is still burning. The newspaper lies folded near the step. The lawn is soft with morning dew and neatly manicured. Pots of inpatients bloom near the doorway. And it all looks so.... so normal.

I can imagine someone coming out that front door. Wearing slippers and a robe. Retrieving that morning paper. Retreating back inside for a cup of coffee and a leisurely read....

And I stand there with Boomer. Just staring at that door. Remembering.

Remembering the time when the paper laid by our front step and the lawn was neatly manicured and flowers bloomed in pots on our front porch. When it was me who slipped out in slippers and a robe and snatched the morning paper and then spent a leisurely hour drinking coffee and reading the paper, in bed,  with Bob.

He always grabbed the front page. I started with the Arts & Literature section. He read every article. Me, I skimmed a lot. He did the crossword. I read the comics.

Right now, Bob is singing softly in his hospital bed. Singing to a tune on the radio. I write this while I wait for Chris to come over, so that I can rush to the pharmacy to drop off a prescription then to the grocery store, then back to the pharmacy and then home again. Ripley sits on my computer printer. Out the window there is no newspaper on our doorstep. The lawn is overgrown. The flower pots are empty. Litter blows down the sidewalk.

And I think of that other house. The normal one. And sometimes I just wish.... I wish... I wish...

Bob's Stroke Story

I recently realized that I haven't covered the strange and terrible story of how Bob had his stroke in this blog.  I've touched on it a bit, but have not gone into all the details. Since I have nothing new to report (we are doing our therapy, still dealing urinary problems), I thought I'd take a minute to cover it here.

In September of last year, Bob went into the hospital to have his hernia repaired. As part of the preparation for surgery, he went off his warfarin. (He had suffered a smaller stroke in 2003 and was on warfarin since then. That stroke left him with only some fine motor issues with his right hand.) This was the fourth time he had hernia surgery in the same spot and this time the doctors put a sort of mesh support in the area in order to prevent the hernia from once again recurring. Because the procedure was more intense than usual, they kept him in the hospital for several days for observation after the surgery. During that time, Bob suffered several TIA's (mini-strokes) and an ultrasound was done in which they found that his carotid arteries on both sides were 90% or more blocked. Initially, the doctors wanted to rush him into immediate surgery, but after much discussion, it was decided that he should wait until his hernia repair was completely healed. He was sent home, told to take it easy and the first of what was supposed to be two surgeries was scheduled for October.

The surgery is called a "carotid endarerectomy" and consists of surgically opening up the blocked carotid artery and cleaning it out and then patching it with a bovine patch. This is a high risk surgery, but the doctor involved performs 100's of these each year and is considered one of the best in the field. We were told that the risk was that part of the clot could break off during surgery and cause a stroke while the patient was being operated on. We were told the chance of this happening was about 10% but that if left alone, Bob had a 40-50% chance of having a major stroke in the near future. With those odds, Bob opted to have the procedure done. It was done on October 21st of last year. The surgery went well. Bob woke up from the procedure, talking and moving, and the surgery was labeled a success.

I spent a couple hours with Bob in ICU after the surgery. He was groggy but seemed fine, to the point of complaining about the supper tray which was a "liquid diet" and he said he was hungry and wanted something more. After he ate, he said he was tired and I, too, was exhausted so decided to go home and once there, immediately collapsed into bed. At 9:00 p.m. that night, the phone rang and woke me up. I heard Bob's voice on the answering machine: "Hey Sweets, it's me" and I jumped up to answer it. He told me he was feeling fine and just called to say goodnight and to remind me to bring his razor and his watch in the morning. We talked for about a half hour. Little did I know, that would be the last time I would hear him speaking clearly...

I arrived in ICU the next morning at around 9:00 a.m. Bob's room was dark, but the first thing I noticed was that the chair by his bedside was gone, so I went to look for a chair. I finally got one of the aides to bring a chair in and as I was putting my bags down (razor, watch, etc.) the nurse came in with Bob's breakfast tray. It was then I noticed something was terribly wrong.

The nurse was trying to position Bob to sit up in bed and he kept sliding down. He seemed to have no control over the right side of his body. He was trying to talk, but everything was coming out garbled. The nurse sort of propped him up and left the room and I, first, tried to shake Bob to "wake him up" but I noticed the side of his face seemed to be drooping and large soggy pill fell out of his mouth, so I ran after the nurse telling her that something was wrong with my husband. I handed her the soggy pill and she tossed it in the garbage. She said to me, "Isn't your husband always like that?"

Then, she said, "I thought he didn't look right when I came in."

She went to page the doctor, who was on the floor and came in pretty quickly. The doctor quickly assessed Bob, said "Something is wrong. This is highly unusual." and left the room to put in some orders. The nurse came back in to hang an IV bag and as she was getting the IV set up, she turned to me and asked if I wanted the scissors to take home, because they were just going to throw them out and they were sort handy little scissors. I don't know why, I still remember this. I guess because I thought it so bizarre, that she was talking about scissors, and I was freaking out thinking that Bob was possibly dying before my eyes and she handed me the scissors. I stood there holding this pair of scissors really not knowing what to do with them. I think I put the scissors on the cupboard. Just left them there.

Then a portable ultrasound was brought up and a tech did a quick ultrasound on Bob. Then papers were thrust in front of me to sign and Bob loaded on a gurney and sped away for what I was told would be an emergency surgery. And I was told to wait in the surgery waiting room. It was now around 10:30 a.m.

I waited in the room for what seemed like a thousand years. At one point, I asked the volunteer who was staffing the desk if she knew what was happening with my husband. Was he in surgery? Was he out? She couldn't find his name on the list because it was an emergency situation so she asked who the doctor was and when I told her, a couple sitting in the room told me that that particular doctor was operating on their mother at the instant and had been operating on her since about 10:30. So Bob was still waiting for the surgery to begin. He came out of surgery around 2:30 p.m. He was alert for a little while then slipped into a coma.

Later I was told that the carotid artery that had been operated on the day before and had been cleaned out had re-clotted. That the clot was so long it ran from Bob's heart to his brain. That the neurologist did not know how long Bob's brain had been without oxygen and it could only be pinpointed sometime between 9:30 p.m. when I hung up the phone and 9:00 a.m. when I found him in the morning. That "too much time" had passed without oxygen to his brain.

The initial CAT scans showed 2/3 of his entire brain damaged, the damage having crossed the midline. Initially I was told that if he woke up, he would be paralyzed from the neck down. That he would never breathe again on his own. That they weren't even sure if all his organs would operate independently. That I should prepare myself to "pull the plug".

A hematologist was brought in and test results revealed that Bob's blood is unnaturally thick. That this was the cause of the re-clotting. This was quite possibly the cause of his first stroke in 2003. Probably the cause of his TIA's after hernia surgery as he was off the warfarin. That this is an unusual and most likely a genetic, hereditary problem.

He was in a coma-like state for the first couple of weeks. After he came to, another CAT scan showed that the initial damage had receded, though still, 80% of the left hemisphere of his brain was damaged. The doctors called this a miracle. Many doctors came to view him and look at his records as they had heard about this "miracle man".

He spent a total of three months hospitalized, fighting off several brain bleeds and various infections and two bouts of pneumonia. While hospitalized, he suffered a pulmonary embolism and a separate ischemic eye stroke which left him blind in his left eye. The doctors say this was caused by his "thick blood" but they didn't want to put him on a blood thinner until they were sure his brain had stopped bleeding.

And he's home now. On blood thinners. His other carotid artery is still blocked, but we're certainly not about to have that operated on..... And he's doing better than anyone ever imagined. Even if his recovery progress is "slow" compared to other stroke survivors.

So that's the story of Bob's stroke. Sometimes, I have to remind myself of this story, because, well... Just because....