Evening...at last

It's amazing how long it can take two adults to shower, eat breakfast and get out the door. But we arrived at outpatient rehab on time, ditching our errands we had planned on the way. Mark had a full schedule from 11 am till 3:30 pm and we stopped at the grocery store on the way home. We arrived home after five, and ate dinner around 7. Mark hit the sack at 9. The only nap he had was the ride home from rehab which takes about 40 minutes. The boring chat on NPR radio and the warm sun shining in the car windows was very condusive to sleeping. After we got home, Mark watched some TV which is something he hadn't been interested in for months. I asked if he wanted to write tonights blog but he declined. He's awake for extended periods of time now and napping a lot less.

He wanted the caption on this picture to say "although I can't walk far or well on my own, I can still drive like a mad man". He very much enjoyed the motorized cart at the grocery store and intends to motor up and down the aisles often until he gets flagged by the store staff!

Afternoon

And last but not least, Mark enjoying sitting in a quiet place at home. Even the cat (nasty thing that she is) was either glad he was home or just needed someone warm to sit on.

Afternoon

Mark was escourted to the curb by one of his nurses. I think all the ladies wanted to walk him out. I'm not sure if this was due to his charming ways or they were glad to see him go. I think it's the former.

Afternoon

Well, Mark stuck to the original plan and was discharged today. The morning was uneventful and we saw his neuro psych and the neurologist, got lots of directions and prescriptions, and we're home. And we have the evidence to prove it. The picture at left is Mark and his friend David with all of Mark's discharge supplies. The bed in the rear of the picture is a vail bed which zips completely closed for the very common Houdini type patients. Almost anyone who has the strength to get out of bed on their own has one.

And the picture on the right is Mark's room mate Ken. They made a great team, sort of like the odd couple.

Evening

Mark continues to show impressive progress. His major complaints are his vision, which seems to get better all the time and the fogginess in his head. I think a lot of the fogginess is due to his anti-seizure medications which I hope they will begin to cut back soon. Mark thinks getting a quiet full nights sleep in his own bed will be even better!

The schedule hasn't been finalized but Mark will be attending the day program at Rehab for the next 3-6 months, three half days per week.

I will post our address and directions soon after we get home. I'd like to limit visitors to his two weekdays off and the weekends. We'll keep a calendar so we can all plan ahead.

Mark hasn't wanted access to a computer yet but I'm sure he'll be back to email and blogging when he gets home.

Evening

If all continues to go well, Mark will be discharged next Tuesday, March 6 at 9:30 am.

Note from Kelley, after his visit last weekend

Got to see Mark this weekend. (a Sunday-Monday weekend), He's doing great for one who has been slammed…still, it was good to have first seen the video clip that Chris posted. A new pic. will be up soon.
You’ll have noticed that all pictures of Mark so far are bad. I thought to circumvent that. I flattered myself thinking that I could, at least, to get a pic. that showed his eyes (they are in there, trust me). After sorting through several takes, I conclude that a good picture cannot be taken in that building; I think it’s the overhead lighting that shadows the eyes.
And Mark…he’s the same as ever, if different. Most all of the ‘different’ is expected to go away. For example, he still has double-vision and does not often make eye contact when he speaks. At first I felt he wasn’t following, but he was. He’ll occasionally tip his head back and go so wide-eyed that there’s almost white all around the pupil. He looks like a tiger ready to pounce…disconcerting on the first few occasions, but he‘s straining to pull the double images together.
When speaking, he’ll pause before replying, and then, in a measured tone, give an answer. The really heartening aspect is that the answer comes back with the same thought and choice of words, and sometimes ‘choice’ words that we all know and expect from Mark. His sardonic wit has not left him. On a few occasions when we were bantering a point back and forth, there’d be a pause on his end, and a smile would slowly work its way across his face, hang there for a few seconds, and fade. He was laughing.
When asked how he's doing, (even by staff, who will breezily inquire) he usually responds: "Fine. In the great scheme of things." But since 'the great scheme of things' includes such items as: 'the moving of the sun across the heavens', it leaves much room for improvement in Room 205. His first request: "I just want to get outta here." Can't fault him there. It's a great re-hab institution, but still...looking from the inside-out, they're much the same. The decor is by Bland Environments, Inc. [their stock must be doing well ], and the food supplied by Uni-Paste Industries.
Which is the other frustration: the whole experience has boogered up his taste-buds. (also expected to normal-out in the next few weeks.) As mentioned before, his beloved Coca-Cola can sometimes taste like lipstick [moreso some times than at others] At dinner he munched some cookies while waiting for the entrée. I asked if they were any good. 'Wallboard," he said. For the main course, Uni-Paste Industries went all-out with heavily breaded Veal Parmagiana. "Wallboard," again...though I don’t think his taste-buds could be blamed this time. The 'wallboard response' might be our body's way of insulating us from institutional cooking.
That’s it off the top o’ my head. As other things surface in memory, I’ll post. Reading back over this, I do not mean to be the least bit gloomy. It was very, very good to see that the essential ‘Mark’ was still in there, unchanged, and chafing to get out. Now it’s just getting the bawd going again, and the expectations are good.
'til then...
Kel

Morning

A video message from Mark to all his friends: <http://mychamp.com/Mark.html>

Evening

I told Mark to do something for the camera, so he put his arm around his cute young therapist. See, I told you not much has changed.

Evening

Mark had his therapy sessions cut short today because he developed a fever of 102.5. It didn't last long and was down to 100.8 within an hour even before they gave him Tylenol. They don't mess around, they sent him for a chest x-ray, took a urine sample and tried to get blood, but I think he left his veins at Jefferson. So they hooked up his IV fluids to his peg (stomach) tube and his temp was down to normal and he was resting comfortably when I left at 7:15.

Mark has been working on his PT evaluation for the past few days. They're testing him on regular everyday movements like walking over to something on the floor, picking it up and handing it to someone. I think this is the final exam before they send him home. After his inpatient discharge he will be attending day treatment 3 days a week.

Evening

Mark had his long awaited appointment with the neuro ophthalmologist this morning. Seems they didn’t have him on the appointment book but fit him in anyway. To make a long story short, he didn’t get any sort of corrective lenses today but the doctor feels that his double vision should resolve on its own in about three months at which time he thinks Mark will only need regular corrective lenses. I didn’t write it down, but I seem to remember (as does Mark) that one eye is 20/70 and the other 20/800. On an odd note, he said that Mark should wear the eye patch only if he feels that it helps his double vision and that the theory of the brain tuning out one eye to compensate is nonsense. He also said (and he put it in writing), and I quote “no need for eye exercises, they are of no value”. Looks like Mark will have to fill a couple hours per day with something more interesting. Mark gave thumbs up on this one!

Mark also seems to have passed the plateau and had an enormous amount of stamina today. It also helped that he hasn’t had a full day of therapy since Friday, but I noticed a great improvement in his memory and conversation. He keeps up with a conversation especially if it’s just one person.

Mark has decided that everything he drinks tastes like lipstick or he complains it’s sour. Not sure what to try next.

His favorite part of the day was riding in the transport van with the sun shining on him. I don’t know how they did it but it seems there’s no south side of the rehab hospital and I’ve never seen the sun shining in any of the windows. Hopefully we’ll have a warm spell soon and I can take him out to sun himself.

The one date Mark remembers is March 6th, his tentative discharge date.

Evening

I saw Dr. Long yesterday and he said he took a quick glance at Mark’s CAT scan and that everything looked fine. I’m sure if there was a problem, he would have told me by now.

It seems Mark's disorientation is mostly with time and place. Seems 1987 must have been either a very good or very bad year for him. He also seems to think that he's been in rehab for either seven or two years - or so it seems to him. As to the place, today it was Florida until I told him to look out the window at the snow and later in the day he said he was in a hotel in Delaware. This is a very very common disorientation among brain trauma individuals. The therapists and nurses orient the patients to time and place throughout the day.

When I arrived this morning Mark’s room mate was out at therapy. I told the nurse that Ken had been talking to me yesterday, (Ken hasn’t talked since his brain surgery) but when his wife Marsha got there he wouldn’t say anything to her. After the nurse left Mark’s room, Mark asked if his name was Ken? And was he married to someone named Marsha? I told him that Ken was his room mate and Marsha was Ken’s wife. He said he didn’t like the name Ken and didn’t want to be married to someone named Marsha. As a matter of fact, he didn’t want to be married to anyone. I asked him “you don’t even want to be married to me” and he said he would marry me only if I was pregnant. Oh man, I’m glad I’m writing this down.

What is the chance that there would be two Amish men with the same last name (Stoltzfus) in one brain unit of one rehab hospital at the same time? One is at least in his 50’s or older and the other seems to be a teenager. The younger one has tons of visitors and they were all sitting in the TV lounge tonight. I think they were enjoying the electricity and TV as much as the visit.

Since Mark has only one one-hour therapy session on Saturdays and Sundays, he seemed to have more energy today. We ordered out Chinese food and he wasn’t very happy with it. He thinks his taste buds are a little off. He even thinks Coke tastes bad so he’s back to iced tea.

Evening

Mark was a little more chipper today, although he was awfully tired tonight and after dinner and his shower, was in bed by 6. When I left at 6:30 he was snoring.

Mark had his x-ray today. They do that to check the settings of his shunts. I didn't talk to Dr. Long but I'm assuming everything was okay. Unlike the hospital, they actually will look for you to give you updates. His CAT scan is tomorrow afternoon.

We had an exercise the other day in PT where I had to toss Mark the ball and ask him a math question and then he had to give me the answer when he tossed it back. They all laughed when I asked him what Pi was but they stopped when he gave me the right answer (and I could tell they didn't know it and they asked me if he was right - beats me but I did look it up and I know he got the 3.14 right). But then tonight when I asked him where he was he said a stadium. Well, we were sitting in a brightly lit room in uncomfortable chairs watching a big flat screen TV!

Evening

Mark's physical progress has been moving right along. He is actually able to walk on his own but the therapists spot him as he walks. Yesterday, the therapist walked behind him and had her hands on his shoulders and made them sway back and forth which made him walk faster and better, and more natural looking.

The Norwalk virus (upper and lower GI virus) struck the rehab hospital over the weekend. Mark's room mate was transferred to the hospital (he's very old). Luckily Mark has escaped so far but there were a lot of new faces on the nursing staff and were they busy! Imagine 50 people with limited mobility and impaired verbal skills with vomiting and diahrrea. They've been cleaning the rooms down with bleach. It's beginning to smell like a YMCA. I guess it could be worse.

They had Mark's team meeting yesterday and decided not to move his discharge date up from March 6 because of his lack of stamina. He has been extremely tired and he says he feels dopey. He decided his anti-depressant which he had been taking for only a couple of days might have caused this. Also, his therapy sessions have gone from half to full hours and I think it took its toll. He has also been sleeping on his back which exacerbates his sleep apnea (he can't sleep on his stomach because he still has the feeding tube, which they aren't using but can't be removed until mid March). While the trach was still in, his apnea was fine. I think this; along with them waking him every 3-4 hours during the night for the toilet isn't helping him get a restful nights sleep. At my urging, they are sending him for a CAT scan tomorrow morning to check those shunts to make sure they're draining okay.

There are a few individuals on Mark's ward whose head trauma have caused unusual and disturbing symptoms. He says it's sometimes difficult to tell the hospital from an insane asylum. There is an older lady, who probably had Alzheimer’s before her head injury. She walks up and down the halls with her handbag, yelling, "Where's my handbag?" Some of her other favorites are "Get out of my house", and "I hate this god damn place", etc. For an old lady her voice has a lot of volume and carries clear down and across the hall. There's another woman, who's about 35 who had meningitis. She constantly strolls the halls giving out orders. You can tell she was probably some sort of executive. She also carries her hand bag and at night wears her coat over her pj's. And then there's a man, who looks to be in his late 30's. I call him Houdini because he pulls the fire alarm and is always hanging around the doors trying to escape (Mark is on a locked wing). All three of these people have one-on-one, a round the clock aide that never leaves their side, even while they're sleeping.

Mark was in the green house and transplanted some little Burro's tails into individual pots. He really enjoyed playing in the dirt. He said it was the most "real" thing he's done since he got there. It's on his tray table and he's very proud of it.

I will definatley post tomorrow to let you know how his CAT scan went. Other than that, he is really doing great. He has his long awaited appointment with the Neuro Ophtomologist on Monday.

Evening

I know I've said this before, but tonight was the best yet. Maybe it was because he had a nice telephone chat with his good buddy Alan? I don't know if it's the medium and not having to deal with the visual part of a visitor or being concerned about how he looks to the other person, but just concentrating on talking with one person at a time and not having to follow multiple voices in a conversation, I think he did extremely well. Of course, I could only hear one side of the conversation. Even though he said he felt dopy the for the last few days ( and has been sleepy), he was very bright and alert tonight. He's wondering if it's some new medication they're giving him. We'll look into that tomorrow.

And he gave up on the tomato conversation too. We're back to how good Haagen Dazs Vanilla Bean ice cream is. He also said that the fresh strawberries I cut up for his dessert to have with the ice cream would have been better if they were raspberries!

Evening

Mark's not afraid of his new found sense of humor getting him into trouble. While I was shaving him yesterday (and I did a damn good job, no signs of blood!) while he sat at the sink in his wheel chair, I kept bumping into the toilet railings, then the arm of the wheel chair, etc. I made a comment that I was clumsy, he said, "No, you just have no idea of the size of your butt." Ah, music to my ears.

He's doing great and looking even better! I made him some tuna salad today and a side of avocado with blue cheese dressing. He decided to mix them together and commented that it would have been even better with a tomato. Then he said yes, a tomato would have been good. Then he said again, wow, I wish I had a tomato. I let all this go, and after a while I asked if he would like to have some lunch time conversation, and he said yes. I asked what he'd like to talk about and he asked if I'd be mad if we talked about tomatoes. I'm still not sure he was kidding. He's been getting obsessive about little things, like damn TOMATOES!

Evening

This is a picture of Mark enjoying a piece of Mardi Gras King Cake sent directly from the Big Easy by his friend, John Robinson. Thanks John, we all enjoyed a piece.

Mark has a very light schedule on Saturday and Sundays, so it's a good time to visit.

Thank you all for the cards and flowers etc. We will be working on Thank You notes this weekend and making Valentines for his team.

Evening

Mark has done some walking with a cane but he can also walk with his therapists on either side for balance, with no cane or walker.

He's able to get in and out of bed and chairs very well. He can also put on his socks, shoes (tie them too) and shirt. Eating is certainly not a problem!

Even though he seems to see small items fine, like a drop of water on his tray table (which he will wipe up) and can read most letters and his cards, and the clock, he complains about his vision all the time. He is being scheduled to see an neuro ophthologist soon.

His short term memory is sometimes still challanged and he even has some long term memory issues, especially when he's tired.

I would post a picture tonight if I could figure out why it's not going through to my email, even though it was successfully sent from my phone. Maybe tomorrow.

Evening

Can you believe Ernest, Mark's new room mate is the same Ernest who was Mark's room mate at Jefferson Hospital back in early December? Sad to say, things haven't changed much for Ernest.

So much for the safety bed! When I arrived today around 2:30 Mark was in bed napping. The mesh flap - which is basically the entire side of the contraption - on the safety bed was unzipped and flipped onto the roof (picture a mesh playpen, turned upside down on a bed), the bolsters were off and the bed rails were down. In other words, it might as well have been a regular single bed. Good thing he was sound asleep.

Dinner didn't seem very appetizing, good thing I brought in some sushi!

While I was waiting for his clothes to dry (their dryer takes forever) Mark and I had a really good conversation. For the first time, it was a real give and take conversation, with almost no hesitation on his part. He wanted to know what had happened to him and I explained the morning of the event and gave him some of the medical details, but didn't go into the real scary stuff. I explained how the ventricles drained, what effect the blood in the brain has on the drainage system, how fluid builds up and causes hydrocephalus and how the shunts work. I didn't go into the infection, surgeries, pneumonia and the blood clot. It's funny how it feels years ago and almost like it happened to someone else.

Earlier in the evening, when we were having dinner with Maggie, Mark's mom, he even joined in the conversation with no prompting.

P.S. We're waiting for you to visit.