I feel like it's the end of an era. We met with Dr. Barnhart. Mark has the skinny on the big picture of what happened to him. I've now given him some of my additional theories of how what happened and why. The burden of Knowing Stuff has shifted, which is good.  There is, of course, a lot of the day-to-day events that Mark won't know about unless he reads my eljay entries. Some of the most traumatic are still writ wide across my memory. I suppose that's not surprising.

We saw all the cardiac PAs while we were waiting in Barnhart's office. Bill, Steve, and Pierce. They were glad to see Mark up and doing so well, and it was nice to see all of them at once too. It rounded out the visit with a nice piece of closure.

It is unlikely that we will ever see Dr. Barnhart again (if we do, it means something has gone terribly wrong), and you know, that's OK.

I said that to make it sound more mysterious.

Almost everything Mark's cardiologist (who I have never had a high opinion of) said last week was overturned this week by his other doctor, who is now going to talk to her and "straighten things out."

Mark is back on a low-sodium diet, but he can have one cup of decaf coffee a day.

He is to  weigh himself every day because a weight gain of 3lbs over 2-3 days is dangerous and he must call a doctor. But he can have an occasional glass of wine.

He has congestive heart failure. There was talk of injection rates, akinetic ventricular performance, and other specific cardiac things. Maybe with exercise, rest, and time it will go away. Maybe it won't and he will always need to be careful. There isn't anyway of telling.

But hey, a cup of decaf and an occasional glass of wine.

Mark woke up with both legs swollen, his left leg very swollen to the knee, and his hands are also swollen. They all hurt, to varying degrees, so it's a lie-down day in hopes the swelling will go down. He's also a little breathless.

Kind of a bummer. The fog has lifted and the day, other than this, will be clear. We are glad tomorrow is another doctor's appointment.

I've started to put the spooky stuff up. Halloween is a big deal to us. Austin and I are November babies, and Mark's new birthday, whenever he chooses a date, will be in the fall. So it is an important time of year.

We are a week out of the hospital. Big progress. Mark can walk without his cane, although he won't get far on foot. He tires quickly (quickly in our house is measured still in minutes) and then must revert back to a cane or walker for more support. But his strength is getting back. We use the wheelchair for long distances. I'm getting a little better at putting it in and out of the car.

The past two days have been frustrating because Mark's heart rate went up, to around 104 on Wednesday, and around 110 yesterday. This is not happy-making,, although we are glad it is lower. He had some chest pressure, which yesterday's therapist said could have been from over working his arms. Of course, if tingles go up the throat or down the left arm, call 911. He was also cold and really tired all day, nothing warmed him up so he spent the afternoon in bed trying to get comfortable. Hopefully today will be better.

Today, Mark has his first cardiologists appointment, outside of the hospital. That should be fun.

Yesterday, to celebrate Mark's conquering the stairs down to the Temple of Dude (slow and steady, and I have to be there for him to fall on) we watched a couple of episodes of Firefly on the big screen in the evening. Woo hoo! He can't do stairs alone, but it was huge to be able to do them at all. Very exciting.

Today the rain is pouring down. Too much for Kai to even go out. He is lying on his rug looking sad at the world. His fur does not dry out very quickly (unlike our previous two waterdogs) and when he gets wet, he stays wet for hours. And hates it. But we will both go out for a walk and get wet later. The Magic 8 Ball says there's a crock pot in my future.

Thank you, everyone, for your support along this perilous journey. We are home and it's good. Home Health signed us up today. Mark walked into the back yard and picked grapes. We're trying to figure out grocery shopping.

It's good.

I don't plan on posting updates of our situation. We are hoping for improvement, and Mark is posting himself on Facebook.  I expect he will keep up with his progress there.

Our biggest hurdle remains getting his heart rate back to normal. That will take time.

We are so glad the dark days are over.  Thank you all for everything.

I can hear Mark breathing as he naps in the bedroom. We are home, after lunch at Alki, and many errands picking up needful stuff. Meds and other things recommended to us.

The meds will be interesting. I'm thinking maybe color coding. Take this one 4 times a day. This one every 6 hours. This one every 12 hours (why not twice a day? Not medical enough I guess). Etc.

Mark needs to call Home Health to start his appointments up, and call various doctors for follow up care. Today, we are doing nothing. He is stiff and sore. The flu shot is still hurting his arm, and very bleh from it. No big deal. I was sicker, and it was not a big deal to me.

It will be great to not have hospital noises (our street is -very- quiet) and for him to sleep as long as he feels like it tomorrow. No nurse waking him up on the hospital schedule. Bliss!

Kai, also is very happy. But don't take my word for it.

"76 trombones lead the big parade. . ." and it would be grand to have them tomorrow.

Mark had his "test" from his PT therapist (aka, Bad Brad, or Brad the impaler) who had him walk to the gym, get up from a "fall," move himself back and forth on the mat, climb a flight(!) of stairs, and walk back to his room. He's walking very well with the walker, and the brace make a big difference on his foot strike. No jell-o hips with the walker.

His heart rate is still down today, below the teens. Once even in the double digits. OK, 99, but that's a double digit! We will really celebrate when it gets back to normal. Normal resting heart rate should be between 70-80 beats per minutes. 

The discharge orders are written. Night nurse showed me that the prescriptions were printed out. Mark got his flu shot. (They have notices up on the hospital doors that if you have a cold, fever, or flu symptoms, please don't enter the hospital).

A little before 7:00 we went down to ICU. Mark walked the short distance to the nurse's station. It was a big deal.  Every one was very excited to see him. Some nurses didn't even recognize him at first.  Lots of hugs (even though Mark didn't recognize everyone) and celebration. I knew it would mean a lot to those nurses who regularly cared for him. That was his "graduation walk."

Tomorrow I will go over to the hospital early. There are a few things to go over, packing to do. Items to pick up. We expect to be away between 11:30 and noon. Mark wants to have lunch somewhere at Alki, and then home. It still seems like a dream to me.

Today was the penultimate full day of Mark's hospital stay. Only tomorrow to go, and then the Discharge Day.  Wow. It has been so long I feel like holding my breath, except for the part where I can't hold it that long.

This morning the physiatrist removed Mark's stomach peg. I understand it hurt like Hell.

( Icky anatomical description for those who don't mind )

It should heal up in a couple of days. Meanwhile, Mark had a sore stomach all day. Pretty understandable.

The wheelchair loaned from Andi is fabulous, and a perfect fit. Much, much better than the hospital wheelchair. We are thrilled, and very appreciative of her generosity. Yay!

scarlettina helped me tidy and arrange and put safety tape on the steps with perfect corners. :-) It was so helpful, and made it fun as well. I'm very thankful for our friends. They have been so amazing.

The other wonderful news of the day is the Mark's heart rate today has been (for Mark) pretty low. 103 in the morning, it only hit 120 once while he was doing PT, and went back down below 110. While that is very high for most people, for Mark, this is incredible progress. His magnesium levels are also high today, and he is coming home so maybe some combination of both of those, who knows?   But I am happy, happy about that. Perhaps we have finally turned a corner on the heart issue. I hope so.

Tomorrow, his therapist (who Mark is now calling "Brad the Impaler") is having him practice getting up from falls. The very idea of falling gives Mark the shivers, and understandably so. However, if you do end up on the ground, best to know how to get back up.


 

 

 

This is the beginning of the third week of Rehab, and only two more days before Mark comes home. Today's home visit went great. We have some changes to make, but comparatively minor. Kai was thrilled to see Mark. I wish I'd thought to take a picture of the HUGE wolfish grin Kai had. Unfortunately I was too caught up in events myself.

Mark made real progress testing out a cane today. His hips are very Jell-o like. That sounds strange but you have to see it to understand. A walker gives more support, the cane not so much. But that he did it, and walked so far with it, was awesome.

His heart rate was a somewhat higher today, possibly from all the work this morning involved with the home visit. At least he wasn't as wiped out as yesterday. 200mg of Neurontin seems a much better dosage. We are hoping that once he gets home, and really gets some rest, we can see some serious improvements in heart rate.

Mark continues to make progress in PT. Today, I got lessons and handouts on how to continue his regimen at home.

Last night, his physiatrist increased his dose of neurontin from 200mg to 400mg. The effect today wasn't so positive. Mark was tired and worn out feeling all day. Very sleepy, but unable to nap between sessions to recruit his strength like he usually does, and his appetite was low.  Tonight, they're cutting the dose back again to 200mg, which hopefully will be better. As Mark said, he'd rather have the pain in his feet than feel so exhausted.

My thanks to varina8  for coming over and helping with Kai-training by being the official visitor. Nice to see her, and Kai certainly enjoyed it. Tomorrow is the home visit.  Tonight I at least got vacuuming done and some tidying.  A little progress.

In a few days Mark will be home. For the first time, we had a real discussion with his OT about some of the things that means.  It seems exhausting to me, and was a little depressing for Mark. He'd hoped to be much further along. Realizing how much work it would be to make a sandwich was daunting.  Thinking about the (temporary) changes and adjustments we're going to have to go through was overwhelming.

This morning, a trip to the hardware store made me throw me hands up. I did OK with the front stair strips. At least there, I only had the choice of different widths. I got the fattest. What kind of safety bathtub strip should I get?  Who knew there were so many different kinds? I gave up. 

We will manage. It just seems like so much right now.  However, it's infinitely better than staying in the hospital, and other people go through it just fine, so will we.

Mark is doing fantastic on his PT. Unbelievably well. He works really hard. We will have to continue it when he gets home.  I must wrestle with the insurance Monday to convert some of his home health to PT. Long, uninteresting story. What you get isn't always what you need.

West Fest is happening down the streets. Lots of noise. Lots of people. Life continues.

 We take for granted as simple things that are actually very complex. Breathing. Swallowing. Walking. I've had the dubious fortune of learning how extremely convoluted each of these (and more!) is. We are astonishing. I'm no longer surprised it took so long for our functions to all be medically figured out. We are both exceedingly fragile and amazingly tough.

Today, Mark learned to take a some unaided steps, then to work on coordination, and to use crutches as supporting devices. Not like a person with a broken leg uses them, but like a four legged insect. It was like watching someone learn how to dance. Or a robot learn to walk for the first time. How to move the hips, space the legs. Kick out the feet. Where to move the arms. Astonishing.

I stood at one end of the parallel bars, to be there as security as he turned, while the therapist hovered behind him. I was amazed as I casually balanced myself, thoughtlessly, while Mark worked so hard to remember how to walk. At the end, he said his brain hurt more than his legs, especially with the crutches, which force you into a "walking' rhythm his body doesn't yet recall.

Now that sternal precautions have been lifted, they are putting more weights on his arms and upper body work outs, and starting him on abdominal exercises. I suddenly feel flabby. I'm not doing three hours of exercises a day! No wonder he's so tired all the time.

Neurontin helped him sleep last night. First time since Mark woke up that he's slept the whole night through. The nerve shocks in his feet get pretty bad at night. So Ambien and Neurontin seem to work.

We think his heart rate is beginning to head down a little. It only hit 130 in the morning, and stayed between 116 and 120 in the afternoon. That's an improvement. Extremely high for anyone else, but I'll take any little step down as a positive sign. Hopefully, it's the beginning of a trend.

Dinner was pizza from the Outside World with the divine scarlettina, so nice to see her and catch up. I foolishly left my cell phone in the charger this morning, so figuring out how to order the delivery was a bit more of a challenge than usual, but we worked it out. Pizza tastes like heaven these days.

This was a busy,  rainy day. I spent much of it running back and forth between home and the hospital, getting things done. Morning was perpetual laundry, dog walking, errands. Off to the hospital for lunch with Mark and the lovely Shelley, who stopped by to visit.

I checked a walker out of the hospital and came back home for the dog trainer appointment, which was fascinating. I learned a lot, and Kai worked very hard. Such a good dog! We have some ways to go. He really wants to please, and you could practically see the steam coming out of his head as he tried to figure out the new things (a new way of greeting people more calmly, a bed command, a more effective stay command, how he reacted to a person with a walker [very skittish]).

Then it was running back to the hospital. I managed to park so that the car was perfectly aligned for the drainage drip of the roof overhand just as a downpour began. It felt like a Marx Brothers episode. I got Mark in. Forgot to shut his door. Forgot to shut my door. Forgot to pick up the pieces of the wheelchair after putting it in the trunk. Got in. Got out to shut Mark's door. Got out to get back in. In the meantime, it was pouring buckets. I got soaked and my seat turned into a puddle, which I then sat in. Very exciting. But we were off for a short trip outside.

Fortunately, I found a parking spot near the restaurant (no wheelchair permit yet) and the sidewalk had wheelchair access, the hill was slight and I am getting stronger so all was good.

Mark had real food, we ate with our friend Joyce, heard music instead of loudspeakers, and no one mentioned anything medical.  It was grand.

The return trip was a little more graceful as it had stopped raining. Mark's heart rate was up a little, but not too terrible. I got him into bed. Now I'm doing more laundry. Somehow, written down, it doesn't seem like much. Why am I so tired?

Thanks to ironymaiden I am now at the correct count of days.  I lost three days somewhere. Don't know exactly where. Some darn weekend or other most likely, when I was too tired to post. I'm not currently interested in going back to find them, although I'd bet dollars to donuts I do eventually. This from the woman who, when Mark's therapist said no one had ever stacked more than six stickum balls on top of each other, spent 15 minutes trying to do just that, and then strategized the correct way to do it on the walk back to Mark's room. I suspect she won't let me back at them now.

I took Mark outside several times today, to catch some fleeting Vitamin D. Fleeting because it IS Seattle, and is IS September.  The rains will come soon, this weekend they predict.

Mark is getting stronger. I can see muscles in his arms now, where before there were none. Seriously, nothing, just bone. He can walk further with the walker. He had his brace mold done today (by Igor, who if you read the Pratchett books, looked like an Igor from Uberwald). We look forward to getting the finished product.

I must go shopping for Mark. I'm doing laundry every night as his supply of "comfy" clothes is slim. And tomorrow a dog trainer is coming by to help with training Kai to deal with moving around wheelchair, walker, cane without tripping Mark.

His heart rate still hits 140 when he's working hard. We asked about beta blockers today, only to learn they won't be prescribed.  His cardiac docs feel it's too soon since he's been managing his own BP, and they want to see if his heart rate comes down naturally first.  Frustrating for me. I worry. And I want everything fixed NOW. Which is as nothing compared to how Mark feels, particularly about his walking and strength.

But he is off sternal protections now, and is getting that a little bit stronger every day. He's gained weight back, up from 136 to 143, so things are definitely improving. I'm getting stronger as well. Not very graceful with the wheelchair. Fortunately Mark is very forgiving as I bump him into things, but I'm learning.

We have an end date in sight. Mark's physiatrist set his discharge date for next Wednesday, Sept. 23. This is fantastic.  This coming Sunday is the Home Visit. A physical therapist and the social director will bring Mark to the house to check whether he can get up the front stairs and see what the general status of the house is.

I suspect we will need to change some things.  At the moment, it seems certain Mark will come home with assistive devices. Walker/cane and a wheelchair. He will continue in PT. Tomorrow people from they brace company will come in to make the mold of his leg and foot, for the cool brace for his right leg.

Still no word on new heart meds, and we were hoping to hear today if he can be off sternal precautions since using his arms would make a lot of things (like climbing stairs) easier as his legs are very weak. We learned today that the shooting pains in his big toe are likely caused by a nerve impingement in the lumbar region of his spine (L-5, to be exact, amazing what you learn in a hospital). He is getting neurontin tonight to keep the pain (which is like an electric shock) from continuing to wake him up at night. It's possible this is the problem with his right foot, and the "numb/tingly" feeling he has in the top of his feet, as that area is controlled by the section of nerve running through L-5.

Today's PT, because it was rounds day and we have permission to leave the hospital for dinner (with a pass), was easy on Mark. He learned how to get in and out of the car, while  learned how to properly go in and out of an elevator and wheel him up and down hills, as well as put the wheelchair in and out of the car. I think it was my PT, not his!

We got a pass to leave the floor today, so had dinner (which I picked up from the outside world) in the cafeteria, and then sat outside in the sun for awhile to just let  Mark be outside. It's amazing how just a little fresh air can improve your day after so long.

The day begin with Kai and I meeting Mark, social director Jane, and our friends Greg and Astrid at Me Kwa Mooks park south of Alki. It was perfect out. Sunny, with a wonderful breeze up from the water. It was early enough in the morning that there weren't too many people out yet. We sat at a picnic table (after Kai excited jumped on Mark to give him a good face licking, a little much perhaps, but we managed) and talked for awhile. Kai was happy to stand between Mark and myself  and our friends and be petted, licking Mark's hand occasionally.

Then we went to Zeeks for pizza. It all worked out perfectly. Couldn't really have asked for it to go any better. Mark and I split a pizza. He had the veggie half. I am an unregenerate pepperoni-eater. I gave a crust to Kai afterwards who was waiting in the car in the shade.

Mark had already started on his occupational therapy by the time I arrived at the hospital (getting the dog home, etc.). Then it was physical therapy. Stationary bike, and stretching exercises. He will be sore tonight!

Next week they will arrange a home visit to check out the house and see about him coming home. It will be assissted, and he will need help. Wheelchair for distances, walker for in the house. He can't stand up yet by himself. Nearly fell over today moving to fast! Thank goodness the CNA was able to catch him. I was on the other side of his wheelchair.

The biggest issue is medical. His heart rate. He has the will and the physical ability to keep working. His heart rate goes up too high.  We hope tomorrow, when his cardiac surgeon is back, his meds can get changed out and he can start those darn beta blockers now that his blood pressure is so good. This is the only issue left. Yet it should be manageable. Fingers crossed.

First, I want to thank our neighbor's son Tommy (and his dad Andy) for cleaning up our front yard. They dead-headed plants, weeded, and generally tidied it up. It looks great! Thanks so much!

I've been cutting back on my medications. Not because anyone told me to, but because I've been feeling good, and with Mark in rehab, thought it was time to start easing back into a normal life. It's been weeks since I've taken any Ativan. It's actually nice to not feel like there's a cotton wall of insulation between me and the world. A few days ago I cut back my dosage of Celexa from 20mg to 10mg, hoping to eventually stop taking it entirely. Today I've had moments of panic about Mark's well being and weepiness. I'm going to try staying at 10mgs for two more days and see how I do. If it gets worse, I'll go back to 20mg. I'd rather be able to get back to just my epilepsy meds, but I need to stay rational.

Today was a high heart rate day for Mark. He did OK with occupational therapy, stayed mostly in the 120s. Physical therapy took him outside (it was a beautiful, warm day here) and i suspect the heat was too much for him. He did a good, long walk in the sun to the bench where I used to have my morning coffee before going to spend the day with him (I thought that was romantic in an odd sort of way), and his heart rate went over 140. So much for walking outside. It wouldn't go lower than 130 while we were outside, so it was back in the wheelchair and into the cool air conditioning.

They are going to order a special plastic leg brace to help with Mark's right leg. It's very cool. Molded to his leg and foot, with a joint for when his foot movement comes back. It makes a huge improvement in his walking. I was very excited to see it.

Time passes both slow and fast in the hospital. I know Mark is frustrated that it's taking so long for him to get home. I'd rather it take a long time, and for him to be safe, than short and something bad happen. I also think that he doesn't really know what a long time in the hospital is. He slept through the summer. Really, that was time travel for him. I know what a long time in the hospital is. I'm willing for it to take as long as it takes for him to get completely well. He's just been in the hospital since August 18. I went back and checked.

Tomorrow I will meet Mark (and the social director Jane) at Me Kwa Mooks park with Kai. It will be lovely to see them get together, and to see Mark out at the beach and enjoying the view of the water. I am very much looking forward to it.

Today is September 11. It still astonishes me how many of us had friends and relatives who were touched by those events. Since I know many of you reading this journal had personal connections, I won't list them all here. One of my own recollections is that it was the first place I tasted Thai food. My friend April was a caterer and I helped her cater the opening of the Thai trade office. I still remember the fantastic taste of the exotic food they served along with ours. No Thai restaurant has yet captured it (although some come close). Some of the things they served I've never seen on a menu. The buildings were still only partially occupied. It was a thrill to be there, at the beginning of something grand. I've never yet, on our trips back to NYC, been able to bring myself to visit that hole in the ground. My weakness, I suppose.

At this point, Mark is very, very tired. His feet hurt, which I take as a good sign. I think, I hope, it means that his nerves and muscles are beginning the work of reconnecting.  He's mentioned shooting pains in his toes in the nights, I suspect it wakes him up. While I'm sorry for that, again, I think it's a sign of healing. He needs to rest more during the days.

He also needs to eat more!! Mark entered the Rehab unit at 144.2 pounds, today he weighed in at 136. His appetite is low. He eats less than most of the other patients. I'm sure his stomach has shrunk over the time he was in ICU. However, he's no longer getting the boost from nightly stomach feedings, and needs to do it all himself. He is malnourished, and I can see it. He isn't dirnking enough water, and isn't eating enough. Hopefully, he will eat more small snacks between meals, even though he doesn't feel hungry. I must find things that tempt his appetite. Hard to do when things aren't hot.  Maybe it's time for that pizza. He did great with the Thai lunch. More tasty meals!

I suspect, and it's only a suspicion, that the weight loss has made it more difficult for him to maintain things like body temperature. He feels hot and cold very quickly. There's no layer of fat to moderate the effects of outside temperature. His heart went up when he did occupational therapy doing things that were not too difficult, and it seemed to be more from the room temperature (the sun was hot, the room temperature was high). Once that was alleviated, everything was better.

Tomorrow I will bring in more tasty water, and think hard about some tastier meals, things to encourage the appetite.

Today is September 10.

July 10, Mark had heart surgery. I said goodbye to him in pre-op as the anesthesiologist (I still have one of his "everything's great" messages saved on my cell phone, I can't tell you why I keep saving it, I just do) told me to kiss him good bye, we'd see each other again in five hours. It was hasty kiss, not properly done. They wanted to get into surgery.

August 10, Mark had his tracheostomy and stomach peg. I had terrible nightmares about the hospital that night. At 2:00am I went down to ICU to make sure Mark was OK. I was afraid to go back to sleep. In the morning I ran into Loretta. We laughed and hugged. We agreed we should have just met in kitchen and played cards all night. She couldn't sleep either. it was her and Harold's anniversary as well. Things did not go as well for them. We are so fortunate.

Today is September 10. Mark is in Acute Rehab. I am home. Today, they stopped Mark's Midodrine, the medication to help support his blood pressure. He is finally supporting a normal blood pressure on his own. That is wonderful. I am hopeful this means soon they can change him over from digoxin to beta blockers.  He is making enormous strides.  He works really hard in PT, and is very motivated to rebuild his muscles and strength.  I think he would work twice as hard if they would let him.  His heart is not ready yet.  They tried to have him go four minutes on the stationary bike, and his heart rate hit 140. That's a "stop everything and rest" sign. It instantly went right back down to the mid teens, which is good. It is frustrating to have that one little rise.

His lungs are almost as good as mine now. We can test them with the IS. Don't ask me spell it. I can't even pronounce it.  Now it looks like it's just that annoying heart rate.

The word currently being kicked around is homeostasis, and that he just isn't quite together yet. Although maintaining his own blood pressure is huge. He still has edema in his legs and feet, and some in hands. His nerves are still rebuilding themselves. Perhaps that's to be expected. Maybe I'm impatient because Mark looks so healthy compared to many of the patients in Rehab. We will get there. We have come so far in just a few days. Walking. Climbing stairs. Bike riding.

And kicking my butt at Scrabble! Over 400 points to my mere 200!  He was a shark tonight!

Today was the first of several really hard days for Mark. His muscles are beginning to get tired from the work he's been doing, and so is he.  His therapist said to expect this for the next couple of days, and then he will move to a new and stronger level.

Today, he climbed three stairs. This may not sound like much to you, but trust me, it's very, very hard.  He also walked 70', and then another 70'.  He walked 100' this morning. That's a lot of walking for someone who, three days ago, couldn't walk at all.  Something Mark needs to remember more often.

His heart is still more tachycardiac than I would like. This morning, when he got up, showered and dressed it got up to 140 briefly. During this afternoon's exercise, it hit 130, before the stairs and during three minutes on the stationary bike. Breathing through his nose and through pursed lips (like my brother had recommended a while back) really helps. He's also thinking of looking into biofeedback and meditation.

Physical therapy is going so well, we just need to get that heart rate down. Fortunately, his blood pressure is finally doing great, so they may be able to start him on beta blockers soon, and they will help more than digoxin. Beta blockers are also often used to help with anxiety, and against stage fright, so he can finally have that career as an actor he's always dreamed of. :-)

Sunday we're hoping for an outing to Me-Kwa-Mooks park, time unknown, so that I can bring Kai to see Mark. Fingers crossed that it works out.