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.

Evening

Mark got a little too self-confident last night and tried twice to get out of bed himself to get to the toilet. Each time he slipped to the floor - not a real fall - and thankfully he didn't get hurt. Nonetheless, they added a mesh tent to his bed so it can't happen again. Previously I could help him out of bed and his chair to the bathroom and shower, but now he had to have a nurse or therapist to help him.

He was also transferred to the other wing of the second floor where the "higher level" patients are. This is the step before discharge. His team is meeting tomorrow and we may have a tentative discharge date.

Not only does he have a smaller and older room (no longer in the nice new wing where he had been) but he has a room mate named...what else...Ernest!

Evening

Mark has rediscovered his love of food. He even thinks the rehab food is good. Mark's cousin Bev dropped off some super bowl food - philly steak sandwiches and wings. Mark was in heaven. He even turned away dinner!

Mark was up pretty late last night so we went into the gym and played basketball and checkers. As for the basketball, I just ran after the ball but we tied at checkers. Then he went to bed for his evening foot rub.

Mark is looking forward to his appointment at the eye clinic. He's tired of his blurry double vision but he seems to be able to read and see the clock. Hopefully we'll see the ophthmologist soon.

Mark's enjoying his visitors so please don't hesitate to stop in.

Evening

Here's Mark's address again:

Mark Seymour
Room 213
Bryn Mawr Rehab
414 Paoli Pike
Malvern, PA 19355
(610) 251-5400

Evening

More good news! The trach is out, the foley cath is out. His hearing and sight is improving. All around a good day.

Kelley, he actually read your letter today. If you could increase the font by one size (two ponts I think) and space the lines to 1.5, it would be a lot easier for him to read.

He practiced stair climbing today. When he got to the landing (three steps up) he said he wanted to make a speech. His therapist Jennifer told him to go ahead. He said he loved women. We all cracked up.

Evening

This will be the third night in a row that Mark will be monitored for his oxygen levels. If all goes well, it will be curtains for the trach. When his bladder infection clears, his foley catheter will go next. At that point, he will be able to have swim therapy. He's walking great, getting in and out of bed, dressing his upper body, and he's having no problems going from his chair, to a standing position and to the walker. He has a lot of work to do with on cognitive skills, although his memory tests go great. We played Rummy Cube at therapy today. Of course, the therapist won (I think she plays the game often - unfair advantage), but I came in last. Mark confessed that he never did well at games before, and he said things haven't changed for the better.

Tonight we heard the familiar noise of the nurses (right outside Mark's door) crushing tablets in a metal mortar and pestle - extremely loud! He asked again (this is several times a day) what the noise was. I told him that the nurses were crushing pills for people who can't swallow, and he told me they should do that around people who can't hear.

Mark told me today that he’s glad he didn’t die. I told him we all agree.

Evening

Mark continues to make amazing progress, both physically and cognitively. This was the first day that he stayed up without napping, and was still awake but sleepy at 9:30 when I left.

Morning

Now that Mark is awake all day, I've been staying with him until 9:30 or 10pm. I'm sorry that's it's not given me much time to update everyone.

Here's a picture of Mark feeding himself dinner last night.

Some important tips when visiting:

DO NOT GIVE HIM ANYTHING TO EAT OR DRINK unless you get an okay from his nurse. He's restricted to a certain size and texture of food, and all his drinks must be thickened to avoid aspiration. Due to his cognitive issues, you can’t depend on asking him.

DO NOT GET HIM UP FROM THE BED OR CHAIR OR INTO THE BATHROOM. Please ask the nurse for help if Mark needs something. He sometimes doesn’t realize his limitations.

His gaze is getting better, but unless your head is on his level or lower, he might not recognize you by your voice alone because he can’t look up. It’s still important to speak slowly and only one person at a time. Give him plenty of time to answer your questions or initiate a conversation of his own.

Please remember, this is information for a good visit for you and Mark, don’t let these instructions keep you from visiting. He loves to get visitors. Please stop by soon.

Evening

Mark's stamina has really improved dramatically. He practiced stair climbing today and walked with very little assistance. His therapy isn't tiring him out as much and he’s more awake in the evenings than before. He even watched some TV tonight. He’s receiving a regular diet and completely off his tube feedings. He has even been initiating conversation rather than just answering questions. Here are some recent pictures.

Evening

We took a whole roll of film today so we should have more pictures to post tomorrow night.

Mark's therapy sessions start at 8 and usually end between 2-3. He's usually wiped out by then, although he doesn't fall asleep till later in the evening.

His progress is beyond what the staff could have hoped for at this time and he received an A+++ at his first team meeting. It takes him a while to process questions and respond with his well thought out answers, but this also seems to be getting easier for him.

He was able to drink some iced tea, and eat saltines and chocolate pudding today. I think he'd really rather have a steak!

Morning

Latest Picture- Mark standing with some assistance. I will post more tonight.

Evening

Mark continues to make a lot of progress. We think he'll be able to eat a simple meal on Wednesday! His speech is improving without covering his trach and I think that will get capped very soon too.

He's scheduled for multiple PT and OT sessions per day now and he's doing great.

Mark send his thanks for the cards, letters and flowers and especially the visits.

Morning

Mark continues to recover at a tremendous speed. He spends more and more time in his wheelchair, and assists his care givers in his transfer from bed to chair.

When we were down in the gym one day, I knew he had been looking around at the other patients, most in much worse condition. I asked him if he felt lucky, he said yes.

He’s having less trouble focusing his eyes, and even started some exercises for his eye muscles yesterday. I saw him practicing the rest of the day. His occupational therapist asked Mark questions about his vision and they determined that his double vision was vertical (one head on top of the other vs. side by side, due to the fact that one eye tends to look down more than the other) and they overlap about 50 %. His lung secretions are lessening and I think the trach will be capped very soon. I’m preparing some of his favorite foods so they’re on hand as soon as he can ask for them.

His cognitive skills are rapidly improving as is his strength; even his motions are more fluid. He can completely follow an object by moving his eyes from side to side and down, but up is still a problem.

For those of you coming from California, Texas and Mass., there are apartments on site at no charge so try give me as much notice as possible and I’ll try to get one for you. It’ll be so much easier to stay there and just walk across the parking lot for a visit. That way you can go multiple times a day. Bryn Mawr Rehab is about 20 miles (and a 40 minute ride) from my apartment.

For all the rest of you, Mark would love a visit anytime!!

Evening

(entry by proud father)
This was certainly a red letter day in Mark’s recovery. He had his first food by mouth since November 28 (about 10 half-teaspoons of apple sauce) which he ingested with no problems. He talked in his normal voice, whether he covered the trach tube or not! He had his first visitor (Cousin Bev) and talked up a storm (Chris’s description.) He seems to get stronger hour by hour.

Morning

Sorry, my DSL has been on the blink for a couple of days, but I think we've got it back on line now.

Visiting hours are 4-9, Monday through Friday and noon to 9 on Saturdays and Sundays.

I went to a very informative discussion group yesterday on the best way to talk to and visit with a patient at rehab. Dick is working on guidelines for a comfortable and successful visit which I will put on the blog this evening. Mark is VERY READY for visitors! Mark is in room 213, which is a private room. The staff, especially his favorite nurse, Brian, is just great. They’re informative and very helpful. Don’t hesitate to press the call button if you have a question.

Mark continues to make tremendous progress, although he is very depleted by the end of the day. Even though he’s tired, he remains awake so don’t hesitate to stop by for a visit.

Surprisingly enough, Mark’s able to talk without covering his trach. It’s not very loud, but it is clear. He prefers you to stand on the left side of the bed (his right) and he will enjoy holding your hand so don’t hesitate to give it a firm squeeze. You may have to sit or bend over to be in his line of vision. If there is more than one of you visiting at a time, please take turns talking and give him time to respond.

Mark isn’t able to eat or drink just yet, so we try to avoid talk of these pleasures.

The latest pictures will be posted on the blog soon (if they aren’t already) so keep checking.

Evening

Mark’s progress is absolutely amazing. He wrote a note to his dad today, which reads “Fear and or pain applied are the best motivators”. We don’t know if this is an original thought or a quote, but we are pleased none the less. He had a full day of PT, OT and speech therapy today and was still awake and ready for more tonight.

Evening

(writ by hand by Dad) First full work day at rehab with some major accomplishments:
Got out of bed twice, sat up in a wheel chair for several hours. Went to the gym, getting out of the chair and sitting on a bench (with some help of course), picked the top cone off a stack several times and restacked them at another location, stood up (with some support) for a count of ten. Passed the swallow test such that he will get some apple sauce tomorrow (first food by mouth in more than seven weeks.) Is actively trying to communicate by mouthing the words, but we are all very poor lip readers. Now these may seem like minor accomplishments -- but try remaining motionless in bed for almost two months and see how much of an athlete you are!

First Evening in Rehab for the Second Time

Mark was transferred to rehab this afternoon and is doing great! They have those small televisions that I mentioned before that are hinged to this hydraulic arm that comes out of the wall that you can push/pull up and down and side to side. Dick and I were guessing which angle was best when Mark reached up and adjusted it himself.

He was getting a shower tonight and I hope they remember to put on his warm socks!

I will be going in at 9 so I can sit in on his consultations with the neurologist and neuro-psychologist. I should have lots of news tomorrow.

Evening

Mark was at his best today. He was awake and alert all day except for a few cat naps. Dick shaved him today and when I told Mark he looked beautiful, he batted his eye lashes at me. He's been doing all sorts of "Mark" things and I don't think much will have changed in the long run. Since today was a holiday, Cigna was closed and we couldn't get the transfer processed. But I think tomorrow we will give rehab another try and this time it's gonna stick!

If you've held off sending cards or whatever, now I think he can really enjoy them. So, the address of rehab is:

414 Paoli Pike
Malvern, PA 19355
(610) 251-5400

Visiting hours are from 4-9 if you'd like to stop by. I'll update when I know what his schedule is like in the next couple of days. I know that therapy is over by 4 but he may need a nap before dinner.

See you in Malvern!

Evening

Mark's nurse this morning said that his exam was excellent around 8am, but he became febrile (that means fever to us nurses – they made me an honorary nurse yesterday) later in the morning which makes him sleepy. He still holds and squeezes hands and follows some commands but has a hard time keeping his eyes open. When his fever hit 101.5 tonight they gave him some Tylenol. Then, right before I had to leave, his fever went down and he was watching one of his favorite shows, Myth Busters. That’s always a good time to leave. The move to rehab probably won’t happen tomorrow, they want his temp to be normal for at least 24 hours before they’ll transfer him.

Volunteers Needed: Dick would like to move some bookcases from Mark’s storage locker to my apartment so we can set up his office for him. We’d like someone with a pickup truck who can do some not too heavy lifting so he can make one trip. If you’d like to help out, call Dick on Mark’s cell phone.

Thanks!

Evening

Well, we're still waxing...

Mark was awake all day and they even had him sitting up in bed which takes a lot out of him. He responded corectly to all the usual questions and even waved to me when he heard my voice instead of when I stuck my mug right in front of his. Since it didn't look like he had a bath today, I decided to bath him. It was a lot harder than I thought it would be. This tuckered him out so when we reclined him he went right to sleep and I decided to go home early.

Evening

We're WAXING...

This is the good one folks. Mark went down for an x-ray this morning and the residents decided to increase the flow of his shunts. Bingo! This is non-invasive; they just use a magnate on the outside of the neck from what I remember. When we got to the hospital they said he was doing great. I needed to see this for myself, but they were right. He was awake and aware, giving a thumbs up, showing the correct number of fingers when requested (it's easy to cheat, they always ask for two), nodding his head (ever so slightly) and of course his favorite, giving kisses. He even gave one to his dad.

Then he had some range of motion therapy and physical therapy. They showed him how to roll onto his side, pull himself up, and get his lower legs over the side of the bed. Of course, he had a lot of assistance with this. Can you imagine what it must feel like to sit up for the first time (really the second) in almost seven weeks? He had a difficult time holding his head up and his gaze looked a little strange. I think he was also a little disoriented too. This tuckered him out and he napped on and off the rest of the day. We took a picture of this and I’ll send it to Bill Champ (my technical advisor) to post with the other pictures. Some of you thought the other pictures were a little disturbing, so I’m warning you now.

Oh, and they moved his room again. I know that Philadelphia is a union town, but do you think someone actually makes money when they move patients? This was his fourth room in less than 24 hours.

They’re now talking about rehab on Monday. At least they have FREE PARKING!!

Evening

I was so happy when I got to the hospital and saw that Mark had moved to the 7th floor, but who was in the bed beside him but Evertt, (not to be confused with Ernest)! They moved the Alzheimer’s screamer with him! I wonder if Mark ever got any sleep last night.

Mark seemed okay when I got there, but progressed to a very unresponsive state rather quickly. I paged the resident (bold one that I am) and asked him to come and take a look. I also requested a CAT scan which they performed promptly. It pays to be a bitch; I should have tried it years ago. After the CAT scan they packed up his things and moved him back down to the 6th floor where they would be able to monitor him more closely.

Do you think he likes it there so much that he actually doesn’t want to leave?

All four neuro residents came into the room to do another evaluation around 10 pm. Mark was still unresponsive, but the new head head doctor, the beloved Dr. Pandey (who isn’t nearly as warm and fuzzy now that he thinks I’m the head case) said “remember we talked about waxing and waning”? I didn’t dare tell him that I’m not sure which is the wax and which is the wane, so I just said yes. He said they’ll check some other things tomorrow – like his stomach etc. but that we just have to give it more time.

So, on the way home I called my friend Chris to get a better understanding on this waxing and waning thing. She said waxing was what you did to your floors and when it’s waning you need an umbrella.

It’s a toss up between a drink and a Xanax, and I’m just too lazy to make that damn drink.

Morning

Mark is moving up to the 7th floor this morning. He skipped this step last time, but the 7th floor is where you usually go before discharge. I think they're being a little more conservative this time since he's not quite back to his pre-rehab self.

This is like a regular hospital floor, he won't be hooked up to all those monitors - wires and leads getting in the way of great big hugs!

Thanks for all your kind words. We may be asking for some favors soon.

Evening

Mark was awake again most of the day. His progress is so swift, he's almost back to his baseline prior to transferring to rehab. He has begun to wiggle his fingers (just a little), toes, opening his eyes on command and puckering up for a kiss. The thumbs up and the head nodding should be close behind. His head has been more centered and even his eyes aren’t always looking to the right. Now that he found the TV again (he was watching Law and Order tonight) he seemed to take a lot of interest in it.

I heard someone from Bryn Mawr Rehab was looking over Mark’s chart today. I think a transfer would be good for Mark.

Mark’s newest roommate has Alzheimer’s and is so vocal that I asked Mark’s room be changed. I’m not sure how lucky we’ll be with that one. I told Mark’s nurse that this man’s constant shouting was upsetting Mark, and the nurse looked past me to a serenely sleeping Mark. Glad I was wrong!

Thank you for your donations to the Angioma Alliance. Make sure to mention Mark’s name.

Morning

I talked to Amiee this morning and she told me that Mark got some sleep last night. She even got him to squeeze her hand once. Since he's in the NICU I can't see him till noon. Hoping for continued good news.

Evening

I spent about an hour and a half with Mark tonight. He looks amazingly well for just having had surgery. His eyes were open the whole time and focused for most of the time too. He wasn't able to follow any commands but his nurse said it's probably because his brain was still swollen. At least his shunts are symmetrical!

Early Evening

Mark is out of surgery and back in his room. They didn't feel the need to do the endoscopy but just put in another shunt, and replaced the part of the one that didn't work. I guess they didn't find any locculations to break up, so this surgery was much shorter than the others. His nurse said the anesthesia should have worn off, but I know it takes him a long time to wake up. He's not responding yet but the resident said they'd keep watch tonight to see how he does.

It doesn't matter if you pray, chant, rant or rave, just please do something tonight for Mark.

High Noon

Good News! Mark's blood became thick enough for surgery and he will be going down in 15 minutes for his procedure.

So, instead of going to the hospital, I'm heading home because my younger daughter Maureen was in a car accident this morning. She's fine, just shaken up and needs a little comforting. I just need a drink!

Let's home for some great news tonight.

Mid Morning

Mark has been having a problem with his blood being too thin. He had been getting low doses of Hepirin but I'm hoping they've stopped it by now. He's also been getting blood plasma for days to thicken his blood. They feel his blood is too thin right now to do surgery. And if it does thicken later today, it will be too late to schedule him. Hopefully, tomorrow.

His nurse said he has been opening his eyes when she calls his name.

Evening

This is sort of like whisper down the lane. By the time the information that the doctor gave me gets translated by me to you it may sound nothing like what he told us originally and probably with a lot of inconsistencies. But here goes: They proceeded very conservatively today. Instead of the major operation they originally planed they went through the original hole in his head and put in a ventriculostomy drain (like the procedure they performed that first night-which isn’t as invasive as it sounds). The pressure was only 10, which was very very good. So, that didn't seem to be his problem. Then they injected dye into this tube to see if it would spread to all four quadrants. And it didn't, but it did spread from the front to the back on that one side. So, tomorrow they will go in again and perform the same operation he’s had twice before, which is breaking up the locculations (scar tissue that’s preventing the fluid from draining all four quadrants as one unit) and maybe some fancy plumbing. We know that his shunt isn’t working and they may need to place another on the other side, or they may just run another tube and Y connect it to the present shunt. But first they need to replace the original shunt since it’s clogged. Got that?

I thought he’d be sound asleep tonight after getting anesthesia for his procedure, but when we went in to see him, his eyes were half open. I can always tell (yes I can, Dick) when he is focusing and can see and hear me as he was doing briefly tonight. I told him all was well and that we’re fixing the problem and he’ll be on his way soon. I told him how all his friends have been asking about him and how that you all are out there reading this and that it makes me feel less alone, and keeps me going.

My boss has decided that she can no longer be flexible with my hours and by the end of the week I will have more time to spend with Mark. This will eliminate a lot of stress and I look forward to sleeping in!

Evening

This mornings CAT scan showed increased fluid in the brain. They tried to perform a bedside procedure to inject dye into the spinal fluid in the brain through his shunt and found his shunt not operable. Unless they need to perform the procedure tonight as an emergency, they will operate tomorrow morning. They will do another endoscopy when they perform this to make sure there is no new scar tissue that is preventing the fluid from draining properly. Mark has already had two endoscopies so I expect this to go without a hitch tomorrow. They will also make sure there is no infection in the spinal fluid. This operation takes about 6-8 hours and it’ll probably take him a couple of days to wake up. So don’t expect too much in the next couple of days.

Early Morning

I called Mark's nurse this morning at 4:30 and he had already been down for his CAT scan! I guess it pays to threaten. It wasn't read yet, but we won the most important part of the battle. I think the resident was pissed that we didn't do the procedure he recommended, when he wanted to do it. Oh well.

Mark's nurse last night was Toni, and she saw him a lot last weekend when he was doing so much better so she actually knew what to look for. I probably told you a while ago that Mark would always open his eyes when they suctioned him or when he had a coughing episode.

SO, THE GOOD NEWS IS that Mark was opening his eyes when he coughed throughout the night. And not just a little bit, but wide open. I still don't think he's responding much, but I'll take any grain of hope there is.

Hopefully this is the beginning of a wakeful cycle.

Evening

I had to threaten the resident tonight to order another CAT scan for Mark. Dick and I decided that it would be a good idea if we could see if there was any change, then maybe we would go ahead with their request from Wednesday for Mark to have another ventriculostomy (drain in his head). We had originally requested that they be conservative to see if he would wake on his own, especially considering they found no elevated pressure or bleeding from the spinal tap they did Wednesday night. Unfortunately, out of all the businesses in the good old USA, major hospital ICU's are the shortest staffed business and they don't do anything routine on the weekends. I asked the nurse to call the hospital administrator on call tonight. Within five minutes the resident said he would order a CAT scan and Mark would go down around 4am to have it done.

When his nurse (who he had last weekend before he left for rehab) performed his Glasgow exam, he scored a 5. But remember, people wake from comas all the time.

Sign Hung in Mark's Room Today

Hi,

My name is Mark Seymour, sometimes people call me Rico. I probably won’t respond to Mr. Seymour.

I have poor circulation in my feet, especially my right foot. Because of this, I move it almost constantly, and the colder they are, the faster I move them.

My gaze has been to the right for the last few weeks. This is nothing recent. Although I have been told that in the later evenings when I was most awake, my eyes looked straight ahead and are focused much better. My nurse last weekend even said my pupils were no longer sluggish.

During my last admission, the last thing I was able to do was open my eyes. I don’t know why, but I’ve been told you will get an earlier, better and quicker response to a thumbs up on my right hand than anything else.

Even though I’m a real ladies man, I respond to a deeper male voice better. Go figure.

I wasn’t always like this. Last weekend while I was still in the hospital I was awake and alert from morning till late at night, nodding appropriate answers, writing my name, mouthing words, waving when my friends came to visit.

Please consider this a short term relapse. Help me get out of here soon.

M

Evening

Well, you learn something new everyday. Mark’s evening nurse told me about the Glasgow Trauma Scale. Here’s a link. http://www.trauma.org/scores/gcs.html
Seems they’ve been evaluating him every four hours for the last five weeks on his alertness. I had to do some arm twisting to get his numbers for today but it was a 9. Now I know what to ask for.

Mark had some voluntary movement tonight. He brought his hand up to his face and looked like he tried to scratch it. And he responded to pain with withdrawal. Except for when they draw blood and can’t find a vein, this is the worst thing to witness. Other than that, he’s medically stable.

Special Post

Thank you Bill Calloway, whoever you are. You made my day.

Early Evening

Mark has a wonderful new doctor (resident), whose name I don't want to misspell, so it’ll have to wait for another time, but he actually came over to Dick and me this afternoon to give us an update.

Mark is stable medically. They removed him from the EEG machine since there was no evidence of seizure activity. His spinal fluid came back negative for infection or traces of blood, and so did his blood tests. As I said before, his CAT scan was also normal and his intracranial pressures were good.

So, why is he asleep and unresponsive? The area of the brain where Mark had the bleeding is the brain stem, which regulates your basic body functions, like temperature and sleep/wake cycles. When Mark first woke up about one week ago, he seemed to go from almost always asleep to almost always awake. The resident thinks he’s in a “sleep cycle” now.

You probably remember me talking about Mark having fevers on and off, although he had no infection? Well, he hasn’t had a fever in days, so maybe he’s overcome the problems regulating his body temp. Hopefully, he’ll be able to regulate his sleep wake cycles too.

Early Morning

There has been no change in Mark's status. His EEG still shows no sign of seizures. He responds to pain stimuli and will open his eyes, but doesn't wake up.

Later Evening

Mark will probably be hooked up to the EEG monitor for a total of three days (just a guestimate from his nurse). They didn't leave a tube in the spine when they finished the spinal tap because his pressures were fine. His blood was thin so they gave him some plasma. His oxygen is now set to 70% (his highest previous setting was 40%) and his sodium and "stuff" were out of kilter so they're also monitoring that. I wonder if he was just sent to rehab too quickly.

Hopefully Dick will talk to the resident again tomorrow morning to see if they have any idea why he’s so unresponsive. His nurse assured me that the Ativan they gave him last night for his seizures would have made him very sleepy, but that it would have worn off in 2-3 hours. She was pretty adamant that even though there has been no evidence of seizures, she thinks he had had them. I've heard that it is rare for him to have seizures from his original bleed because of the location, but who knows what they did while they were in there breaking up the scar tissue.

Even though he's not waking up at all right now, he’s been here before and has made great strides very quickly so I’m staying positive.

Early Evening

A big thank you to my lovely boss Lisa, who's working extra hard to cover for me so I can get away to visit Mark as often as I can.

They had Mark hooked up to an EEG for over 12 hours. There was no seizure activity. At all. None. (I told you so)

They did a spinal tap to check for new bleeding and increased intracranial pressure. They were also planning to put another drain into his head. Dick asked them to be conservative. Good idea. They're waiting for the labs to come back on the fluid, but that also looks good because they didn't see any blood. His intracranial pressure was fine, they were going to put a drain in his spine to drain the excess fluid, but Dick said he didn't think they had to do it. (I told you so)

He's still out of it. They said the Ativan they gave him last night would knock him out. (They were right)

When I saw him this morning his feet were still - and they were warm. (I told you so)

I'll update again after my evening visit.

Later Evening

I was determined to stay at the hospital tonight until Mark had a CAT scan and I talked to the resident. When I was still there by 1am they decided to talk to me so I'd go away. Do you believe that all the residents had a rotation yesterday and there is a whole new team of doctors there who have never seen Mark before? A great way to evaluate him against his prior status! We know their chart documentation processes leave a lot to be desired.

We need to go back to last night. After his bath, Mark was chilly. His feet were very cold and he was tapping them even more than usual. He does this to help his circulation, something he's done since I've known him. I rubbed his feet to warm them up (they stopped their movements for a short time) and I even put some fuzzy socks on him. They only had a very light weight cotton blanket and it was freezing in his room. And if I'm cold with my hot flashes, you know it's cold! Even the nurse said the room was cold. He was tapping more vigerously than usual.

For most of the last five weeks, Mark's head is turned to the right and he gazes to the right. I'm sure you can tell this from the hospital pictures that are posted in the link on the front page. There are times, usually at night when his eyes look straight ahead and his head is also straight and he seems to be able to focus better. This doesn't happen that often, but it is improving slowly.

The doctors at the Rehab center thought he was having seizure activity due to the foot tapping and his right looking gaze. Even the resident tonight suspected those two things could be caused by seizures. I asked the resident if it were seizure activity, would the foot tapping stop if I rubbed his feet? He said definately not! For those of you who have seem him in the hospital, I'm sure you remember the foot tapping - at times even his lower leg was swinging off the bed.

His CAT scan showed no changes. What we were most afraid of was another bleed, but there was no evidence of this. And I guess the shunt looked okay too.

Mark was still hooked up the the EEG machine when I left, hopefully this will be read sometime tonight.

But Mark also didn't want to wake up today which was a great concern to the Rehab staff. But do they know he's only been awake for extended periods of time since last Friday? And after all his activity yesterday with the ride to rehab and the shower, maybe he was just tired? He did wake and respond on the ambulance ride tonight from the rehab to the hospital, and again for the resident when he arrived at Jefferson.

I hope I can say " I TOLD YOU SO!!!" tomorrow.

I will keep you posted.

P.S. I received my lovely Angioma Alliance pin today from Mark's angel Connie with a lovely note. I hope you gets yours soon. http://www.angiomaalliance.org/donate.html

Wednesday Night

Well, another bump on the road to recovery. After the almost euphoric reception at the Rehab hospital last night, Mark did one of his withdrawal things and refused to respond to the Doctor's tests all day, remaining asleep. He looks much better in a tee shirt and pants than he did in the classic gown, clean shaven except for the goatee and his usual moustache -- very Vincent Van Gogh with his nearly bald head. Yesterday I told him we might have to clip one of his ears to heighten the illusion -- he definitely understood and winced. Because of the setbacks, Dr. Long, the neurologist at the Rehab, decided to send Mark back to Jefferson for an evaluation. He will be transferred back there tonight some time and will return when they think he's ready. Chris and I are quite disappointed, of course -- but the whole recovery process has been like this. I will post more in the morning when we hear something from the Jefferson doctors. (Dick)

Evening

Mark is all settled in his room at rehab. He even had a shower tonight! They have a waterproof gurney that they roll right into the shower. After five week, I'm sure he loved every drop. His stitches have been removed along with his IV and the oxygen monitor on his finger, and all the leads to the heart and breathing monitors. I was finally able to get a big hug tonight. They even brushed his teeth.

Unlike the TV in the hospital which is mounted high on the wall and not at all mobile, he now has a TV like the overhead light at the dentist. It can be lowered, raised, swiveled, moved forward and back. I guess you all know where this is going.

Our visit ended earlier than I thought, but it was good to get home and to bed early.

I may not get a chance to visit tomorrow, but I’ll have Dick Seymour take over the blog for me for a few days.

Afternoon

Mark is going to rehab today. Here is their website and their directions page. http://www.mainlinehealth.org/br/article_1951.asp

I will update their visiting policy etc. tonight.

P.S. Bryn Mawr rehab is not in BRYN MAWR! It's in Malvern. Please Mapquest or Google Map it for directions.

Evening

Even though Mark was awake all day today, he wasn't as lively and responsive as we was yesterday. I think all the excitement of visitors tuckered him out. But I brought in his favorite soap (Pure and Natural) and shampoo (green apple) and gave him a good washing. I think he liked my bath better than the one the nurses give him. Since my kids read this, I won't go into details. And he smelled like Mark again!

He's had no more fevers but the medicine that they give him in his breathing treatments makes him perspire, which they said was normal.

He's been moving his entire legs, arms and head, and even moves his body a little to get comfortable. When his nurse shined the flashlight in his eyes tonight, she said his pupils weren't sluggish at all, which was a first. And he's beginning to look straight ahead, up till now his eyes were looking to the right only.

Derrick and Tina stopped by today and although I wasn't there, Mark agreed that he enjoyed their visit very much. And Mark had other visitors this morning, but I forget the note they left and don't remember their names. But he remembered their visit when I saw the note and asked him about it.

I'm back to work tomorrow and don't know how much I'll get to see Mark. Hopefully we can work something out so I can leave a little early.

I think he may be transferred to rehab soon. Let's keep our fingers crossed. He told me that the hospital was boring. I offered to read to him again today but he declined. I hope my reading's not as bad as my singing!

Evening

Today was the best day ever! Mark was wide awake when I arrived at 11 and was still awake when I left at 9. He was also the most aware that I've seen him since this all happened. We were having a nice little visit when his friend Doug arrived. When I told him that Doug was there, he turned his head with no effort and grinned the biggest smile I've seen yet. He was so exicted to have a visitor, and if that wasn't enough, Tina came to visit after Doug left. He had a really big day today.

And if that's not enough, the ventilator left his room tonight and he had no fever at all today. I gave him a good washing up which he didn't seem to mind at all. He seemed to have better control over the movement of his head and eyes tonight - the best I've seen so far. He even looked toward the TV, but I'm not sure he was interested in it.

Oh, I even bought the newspaper today and read him some. I think that's when he took a short nap. Then I tried People and it put us both to sleep.

Have a good New Year and a safe 2007!

Later Evening

I almost didn't go back to the hospital tonight because I was visiting my neighbor who had foot surgery and was having such a wonderful evening chatting and listening to music. But I called the hospital about 7:30 and when Mark's nurse told me he was awake and alert, I rushed right out. But by 8pm he must have had enough and had gone to sleep before I got there. He looked very comfortable and peaceful and I stayed a bit and gave him encouragement. He often wakes up when he coughs as he did tonight. Not only was he using his weaker left arm, but he was raising it and scratching his nose and fixing his mustache! And at one point he actually lifted his head off his pillow and turned his head. This was worth going back for. I only stayed till 9 because it was apparant that he wasn't in the mood for visitors.

I think I'll bring the newspaper tomorrow and read him some of the news. We'd love some company. Here's the address again: 9th & Walnut Sts. at the Jefferson Center for Neuroscience in center city Philadelphia. I promise to have the football game on if you stop by!

Early Evening

Well, everyday can't be a great day. Mark's temp was up to 101 today so he's been sweating a lot and sleepy, although we did manage to have a short conversation. I told him how much he's progressed since just last week and though he may not see a huge improvement, I have. So, I basically did the talking and he did the listening. I guess things haven't changed all that much in this relationship!

He's still getting ozygen into his trach although he hasn't been on the ventilator for over 48 hours. They're hoping to get his oxygen saturation level up to 100% without any extra oxygen, and right now he's in the mid 90% while receiving 40% oxygen.

There's no PT or OT on the weekends so there's no progress to report there, and due to the fever, they didn't get him out of bed today.

His fevers seem to take a break every other day so I expect him to have a good day tomorrow if anyone out there would like to visit. Maybe that's a little too gentle. Hell, you've got the next two days off, so let's see some of those friendly smiling faces! I'm sure it would make Mark's day.

Afternoon & Evening

Well now, where do I start? I called the hospital this morning around 7:30 and continued to call until 11:30 till I finally could talk to his nurse. She said that PT and OT had him sitting up in a chair – not the bed/chair conversion that he was in the other day. It was really a wheelchair with head support but she assured me that he held up his head and upper body on his own. She was amazed at his progress. When I got down there for my lunch time visit, even though it was after 2pm, he was back in bed and a PT tech was doing range of motion with his limbs, but Mark was very sleepy. Sitting up had taken a lot out of him. At one point, after the tech left, Mark opened his eyes and had a concerned look on his face. I asked him if he was okay and he nodded “no”. I asked if he was in pain and he again nodded “no”. I could tell by the look on his face to ask the next question, if he was depressed, and he nodded “yes”. I told him I wasn’t surprised that he was depressed, but I also told him that a week ago we could hardly wake him up and he could hardly open his eyes. I told him of the phenomenal progress he has made in only one week. I don’t think he really gave a shit what I was saying, but it was the first time that he was so aware of what was going on.

When I got back to the hospital around 6, he was in a deep sleep. He did open his eyes a little but had that blank look and didn’t squeeze my hand. His nurse said that evenings were difficult for him and that’s when he’s the least responsive. And of course, that’s when I do most of my visiting.

So, how about all you folks that have been following my every word? I asked Mark if he would like visitors and he nodded yes. You can visit as early as 11am and I know he would be thrilled.

And Mark was off the ventilator all last night and I think we can see Rehab from here.

Evening

I saw Mark's respiratory therapist tonight and asked her to explain the protocol for him needing to be placed back on the vent at night. She said if his heart rates rises or his oxygen saturation levels get low, they place him back on the vent. Then she said matter of factly that "oh, he probably just needed to be suctioned". So, he's been on the vent three or four days (even though it's only a few hours per night) more that he needs to be because his nurses aren't paying enough attention to suction him more often? Could that be true? So, before I left I asked his nurse and the assistant to please check him more often than usual to see if he needs suctioning tonight. His doctors would really like him off the vent for good. I intend to ask his doctor about this tomorrow if he winds up on the vent again tonight.

He was still sleepy tonight during my visit. I was there from six to nine and he only woke up a few brief times and was not very responsive. He was soaked when I got there, and his fever had only been 100.4 orally. They had given him some Tylenol and when his fever came down they bathed him again.

Afternoon

Mark was sleepy during most of my lunch time visit, but he does wake easily from a voice or noise. He had his PT while I was there and was actually doing some of the moving on his own. His nurse shaved him this morning and now he has a goatee. It's cute. Not much else new to report.

Morning

Mark has been waking easily on his own, no more shouting and pinching! But he has been back on the vent for 3 - 3.5 hours each night. And no more diarrhea since they gave him a different formula for his tube feedings.

Mark is in room 605, bed by the window. If anyone would like to visit Mark now before he goes to rehab, I just have a few suggestions:

1. he hears you even if his eyes aren't open - so talk to him, just don't ask him too many questions, it still takes a lot of effort for him to nod
2. he favors his right side, his head is usually turned to the right, so stand on the right side of the bed
3. he will probably give you his right hand, if not, place his hand over yours, he will squeeze it
4. if his eyes are open, place your head directly in his gaze, he sometimes has a difficult time following with his eyes alone, and he doesn't move his head very easily
5. there's a sink at the entrance to his room, WASH YOUR HANDS PLEASE
6. don't visit if you are sick
7. I think no more than one or two visitors at a time is good
8. keep your visit short - I think he's more awake in the mornings

And don't forget to blog your visit for those who can't get here to visit him.

Evening

Since Mark was asleep this evening, I didn't go back to the hospital. But I did call and he was resting comfortably and I will see him tomorrow afternoon.

Afternoon

I took a break from work to spend some time with Mark this afternoon. When I called the hospital this morning around 11, his nurse said he had participated in his physical therapy earlier and was waking on his own. I went right over to see if I could catch him awake and I did. He stayed awake for a couple of hours then took a long nap and was still sleeping at 4 so I went back to work.

They did need to put him back on the vent for a couple of hours last night, but when he's off for 48 hours, he'll be off to rehab.

I'll go back later tonight after dinner and will post when I get home.

Later Evening

Well, maybe it's me? Seems Mark has been awake and alert tonight. They think he may have his days and nights confused. I may have to camp out there tomorrow night to see for myself.

Evening

Mark was really uncommunicative today. His nurses were having a difficult time waking him during their every four hour check ups.

But the story began the end of last week when he was transferred to the other side of the floor, the non ICU. His nurse asked (sorry if this embarrasses you Mark, but its all part of the story) if Mark had had a BM. I told her he had two that I know of since his admission. I also told her that if I’d known this was information I was to track, they should have told me. She decided to help nature along and began him on laxatives. That was the 23rd and it seemed to work right away. She was also very upset that she couldn't find evidence of his prior "movements" in his chart. The very next day, when I stopped by to see Mark after Christmas Eve dinner, I was surprised to find that he had an episode of diarrhea and no one had noticed. When his nurse came in, he thought it was a good thing because he also was under the impression that Mark had still not gone. The indignant nurse from the night before had not noted this in his chart. And of course when Alan visited Mark last night, he had gone once or twice again! After I talked to Alan on Christmas night, I called the nurses station and told them not to give Mark any more laxatives. I also asked that they check his “feeding formula” and if it was a milk product, maybe they should try something else just in case he has become lactose intolerant. When I got there today I made sure that everyone heard me ask that his laxatives be stopped.

So, now his electrolytes are off balance from the diarrhea and they have been giving him sodium. And he’s been sleeping all day. He did open his eyes a few times with much prodding, and not for very long, but he did squeeze my hand a lot and always is able to pucker up for a kiss. They didn’t seem too worried about the sleepiness and evidently don’t think it’s from pressure, and they don’t think he’s having trouble with his shunt, and haven’t sent him for a CAT scan. So I suppose that’s a good thing.

AND THEY MOVED THE VENTILATOR OUT OF HIS ROOM! Four or five days to rehab (keep your fingers crossed).

Evening

Hope you all had a very Merry Christmas. We didn't have the usual celebrations this year but it was a great day all around. Mark had no fever today and was awake and very aware for most of the day. He even attempted to write me a note, but all I could read was "It's", which was very very clear. I'll try to get the rest tomororw. He nodded appropriately and even listened to some phone calls I placed for him to his parents and a couple of very close friends. And when I put the TV on tonight to Myth Busters and Law and Order, he even watched them! Unfortunately, those high tech hospital beds rock and roll so much it was difficult to keep his head straight for long to watch the TV.

My biggest thanks today was to my family, who unselfishly gave up our usual holiday celebrations. My oldest daughter Susan, and her husband Mike took over our Christmas Eve celebration of the Italian seven fishes and treated us all out to a wonderful dinner last night. We had a great meal and a few glasses of wine. And to my youngest daughter, Maureen, who had to work today and sadly opened her presents alone. I promise to make it up to both of them when this crisis is over.

And thanks to you all who follow the blog and leave all those great comments. Here's to a better 2007.

Evening

Today was basically the same as yesterday. He was off the vent during the day, but they do put him back on at night for a rest. He didn't open his eyes much today, but when he did I saw more recoginition than yesterday. He still communicates with hand squeezes. He's moving in the right direction, looking forward to Tuesday to see what they recommend next.

Morning

I spoke to Mark's night nurse around 5:30 this morning. It seems he likes to be awake during the night. The daytime stimulation may be too much for the healing brain. He had no fever but they were having a difficult time finding a vein for his IV due to the swelling in his arms.

It's almost 11am and I called his day shift nurse. She said she placed the line with no problem and he's waking on and off on his own. He's even responding to questions by nodding his head and knows where he is, the date etc. That's some internal clock! He's also OFF THE VENT and breathing through the trac with extra oxygen.

His colleagues at BMS made him a great poster which I took in to the hospital yesterday. I'll try to take a picture with my cell phone and post it tonight. He listened intently to all their good wishes.

Tomorrow I'm going to print comments from the blog to read to him. So, if you've been holding back, now's the time to post!

I'll be going down to see him mid afternoon, then going to dinner at 7 with my daughters. I'll try to sneak back in late tonight to catch him awake!

When I talked to the resident yesterday, he told me that Mark had his bleed in a very delicate area that most people don't survive. They are amazed that he's doing so well.

I gave Dick Seymour my copy of "It's a Wonderful Life" and I'd like you all to catch it this season too. It's the last few minutes of the film that are important to all of us and that remind me so much of Mark. But I'm not going to tell you what it is, you'll have to see for yourself. And I bet there are a few, like myself who know all the words by heart. The reason I love that movie so much is that Mark Seymour is my George Bailey. (don't tell this to Mark, he hates that movie)

MERRY CHRISTMAS TO ALL!!

Evening

Mark had another good day today. His temp was up and down but still no sign of infection. Although he was reluctant to open his eyes for very long, he was aware for quite a while, waving to people who came into his room (with some prodding), squeezing my hand and puckering up for a kiss. He even ever-so-slightly started nodding his head again in response to questions. He was also completely breathing on his own with oxygen assist from the vent, but he may be completely weaned off the vent tomorrow. Even if it doesn't happen tomorrow, I'm hoping it's real soon and it's off to rehab! He had a CAT scan today and the shunt is working fine.

How You Can Help

Mark’s Guardian Angel

Connie Lee, the founder of the Angioma Alliance has been a godsend. She found this blog and contacted me! When information isn’t forthcoming from the doctors or difficult to understand, Connie is always there whenever I call. I’ve often wondered if there’s more than one Connie. She has always given me hope, which I’ve passed onto you. I don’t know how I would have gotten this far without her.

I know that you all out there want to do something for Mark and until he is up to visitors, how about showing your support in a way that will raise awareness and help others too? If you donate only $10, you can get a CCM lapel pin http://www.angiomaalliance.org/donate.html or for only $5 you can get one of those magnetic car ribbons (go to the bottom of the page of the newsletter) http://www.angiomaalliance.org/docs/December_2006_newsletter.pdf

And while you're ordering, make sure to give a big thanks to Connie!

During the night

I spoke to Mark's nurse this morning. His fever was higher (in his case, this is not necessarily a sign of infection but they gave him some Tylenol and it came down). The part of his brain that was affected by the bleed controls body temperature, so this might take a while to resolve itself. He is easier to rouse and responded to commands with his fingers and toes. The head movements seem to be coming back slower.

If you want some encouragement, go to http://www.angiomaalliance.org/Stories/menu.html and read the stories written by the people who’ve been there.

Not sure how you want to post this and I know its super long, but here's the story....Damon

Although we are about 3 weeks into it, I'll try to add a detailed description of how this all began so that all can know the soup to nuts. (no pun intended). I mean, who really wants to walk into a movie after missing the beginning? I applaud you all for sticking around for this entire” motion picture" even after missing the opening acts, but I guess you've invested already, the story was that compelling, or you have TIVO. Well, allow me to press rewind...- The night before...Mark, according to many sources, was bright-eyed and bushy-tailed coming off of his work day. This may very well have been the first sign that went unnoticed.- The early morning of...I went to bed before Mark came home, but woke up in the middle of the early morning for no reason at all. My sleep cycle has been off for quite a while, but enough about me. I remember him making the usual overnight trip to the restroom. I heard a little extra noise, but nothing that necessarily set off any car alarms or incited any howling dogs. I eventually went back to bed and woke up around 7:30-8am. While in my room banging around on my mac, I heard through my far from sound-proof door the usual morning movement from my 2 roommates, Mark being one. They both leave right around the same time on most mornings. After all the commotion, I could only hear myself typing again. I realized around 8:30pm that I needed to grab an item out of Marks room, so I opened my door and walked straight into this room. His door was wide open. Through his partitioning IKEA shelving unit, I saw his bed, and then saw a pair of feet. I bent around to see and discovered that Mark was still in bed. I'm no detective, but it was certainly unusual for him to be in bed, asleep no less, with his door wide open. I had assumed he wasn't home, very little did I know. So, I inquired about his state, and why he wasn't out the door, or at least in the shower...- drama escalation...He began telling me about a very strange dream that occurred the night before. He told me that in the middle of this dream a woman who was initially pleasing to the eye became instantly demonic, though he doesn't believe in that stuff. He immediately awoke from this shocking moment with an intense headache, shortness of breath, and blurred vision. I think this is when he made his vertigo like trip to the rest room around 4-5 in the am. He went back to bed after this episode and more than likely left his door open because he was only trying to get right back to bed so that his symptoms would subside. We started talking about a few other topics, one of which was a conversation he had the night before with a mutual friend of ours, Derrick. He told me they both had a good laugh at my expense, but despite that, he loved me and he only makes fun because of this so-called "love", ha. I never doubted him, plus it works both ways. He firmly shook my hand and told me that he'd get up soon and make an attempt to go to work. - The second red flag showed up right about... now. As I assumed things were normal, I gestured to leave thinking the conversation was over, but Mark began to tell the same story about the dream he had, followed by the same story about how him and Derrick were making fun of me, followed by "I love you, you're a good friend"...He added this time to his dream episode that he really felt like he was going to die when he couldn't catch his breath and was experiencing intense pain. Then, he told these stories again... For a minute I thought that he was repeating the stories for emphasis, but it occurred to me that he was telling me these stories as if it were the first time he told them. I eventually offered to get him some Advil and o.j. - and my level of concern increased, but wasn't yet at high alert...After about 20 minutes, his trip to the bathroom was hardly successful. His balance was compromised to the point where he had to support himself on walls and countertops. It seemed as if his strength was far from 100%, and additionally his blurred vision only exacerbated his balance, or lack thereof. Plot thickens...When he began to stumble, I ran out of my room to help him, and brought him back into my room and sat him in my office chair to relax. I grabbed his damn near Xenon headlamp flash light from his desk and flashed it into his eyes to see if his pupils would respond. They didn’t. They were fixed, but not dilated. This could be good or it could be bad. He told me himself that if they were dilated and fixed, that’s bad. If they are differentiated, that's bad. But since they were small and fixed, it may not necessarily be a problem. We waited a while as Mark closed his eyes to try and dilate his pupils so that when flashed the beam I could visually see the response, but each time we tried we came up with the same result, which worried me even more. He then told me that this had happened before, and that it was no big deal. I told him I thought it was a big deal. He insisted that it wasn’t. I told him he needed to go to the hospital. He said well, do I go through the hassle just to find out that nothing is wrong like last time? I said yes, you do. He continued to be stubborn, so I let him call a few shots. He said, I’m going to back to bed to sleep this off. I helped him back to bed, and stayed nearby to monitor him.- late morning our mutual friend/jokester, Derrick, came over to work on a project with me, and I told him of Mark's condition. When he went upstairs he said mark was attempting to get up and go to the bathroom unsuccessfully. Now, with Derrick on my team & the upper hand, we made it a point to get Mark to the hospital. Derrick insisted on it. Called Chris to let her know he needed help, but didn't convey the level of severity since it was unknown. She said bring him to Lankanau to the ER since his regular Doc wasn't available. We helped him downstairs, into his truck, and to the ER immediately took him in, evaluated him (BP, Temp, EKG...) and moved him into a few more tests after hearing both sides of the story. After an MRI and a Brain Scan, the doctors said that they spotted intracranial bleeding and were waiting on the neurosurgeon for the actual diagnosis...As Derrick and I waited next to mark in one of the ER patient rooms, we noticed Mark's short term memory was getting worse and worse. Every 5 minutes he would look at us with his left eye a little crossed, hand extended to shake, and say "thank you for being here, I appreciate it". Much like earlier I initially thought the repetition was for emphasis, but it was clear that he had no recollection of saying it the first time. Though his balance was off, his memory was off, and his vision was off, one thing that remained in tact was his wit...Some of the funniest lines I've heard in my life occurred in the hours we spent at Lankanau. I'll list a few: 1. as his memory started to fade along with his vision, he forgot his surroundings. He pointed in our (Derrick and I) direction and said” who is that", I said its Damon and derrick, whereby he replied” okay, I could only make out 2 dark figures, one darker than the other" I responded by saying "yeah yeah, all black people look alike” and he smiled and extended his middle finger. He loves racial jokes. 2. A nurse came in to take his blood pressure, and he said to her” Where’s the pretty blonde nurse, why can't I get her?"3. His vision was not only blurred, but what he could see was doubled, so when an attractive nurse did eventually make his acquaintance, he said "oh, a pretty nurse, wait no....2 pretty nurses" then a second nurse came in to help wheel him out for some more tests, "Yes, FOUR pretty nurses"4. These same nurses brought him back and mark made some type of pass at the one nurse, and her response was "I don't think my husband would like that" whereby Marks replied "I hate to be the one to break it to you, but I don't care about your husband as much as you do"5. When the neurologist came in, he said to Mark "Hi Mr. Seymour”. Mark responded "Hi, How are you"? The Doctor said "I’m fine, I’m your neurologist", so Mark says "oh, well in that case, how am I?” So, that is pretty much how it all happened. From Lankanau, he was airlifted to Jefferson because they have a highly sophisticated Neuroscience Center.

Evening

Mark was transferred to a non-ICU room on the same floor of the hospital. He reluctlantly work up for me and kept his eyes open for a few hours. But we can't have everything. Over the weekend when he was awake for under an hour, he responded to me with nods and winks. Today, although his eyes were open, he couldn't respond with any of these. He did, almost constantly, stroke his fingers on my forearm and I swear at one point when I laid my head on my arm and fell asleep, he tapped me awake. Son of a bitch, now he's awake and we all have to be awake!

I've learned not to get too excited with these small improvements, they seem so fleeting. And for the first time in my life, I've reluctantly learned to take one day at a time.

Starting Tuesday, Dec. 26 I'll be working very long days and may not get to the hospital until late and won't be able to stay very long. There might not be much to report, but I'll do what I can.

Thursday Evening

I talked to a hospital social worker yesterday who needed me to consider a skilled nursing facility for Mark. Evidently they don't think he'll be weaned off the respirator again as quickly as last time. They have done all they can do medically for him and will consider him stable in a few days. Rehab facilities don't accept patients on ventilators but these places do. And nursing homes too, if his insurance doesn't cover for former.

If that wasn't enough, he had a blot clot in his leg last night that needed emergency intervention. Since he can't be placed on a blood thinner because of his angioma, the opened the vein/artery (I don't know which one) in his groin and placed a filter so the clot can't travel to his heart or brain. The nurse told me he would be back in his room by 11 so I tried to stay awake to call. I called at 11:05 and she said that he did fine and there were no complications. She also said he got back to his room at 9:30. Of course, none of them would never think to actually call me with any news. You only hear from them when they want to perform a procedure, cha-ching!

Evening

I guess the second time's the charm; Mark received his shunt today. He was in the OR over six hours. Although they found more inocculations and scar tissue today, they were able to see from one side of the brain to the other. I guess this was something they couldn't do on Monday. They said if he develops fluid in the back ventricles, they can run a tube from there to the existing shunt, without adding another shunt. When they brought him back to his room around 6 I was able to see him for a few minutes. His doctors were in and they put him through the "open your eyes", "wiggle your toes" routine which he did well and he even squeezed my hand. He was much more alert so shortly after surgery than I have seen him in a couple of days.

I went out to Bryn Mawr Rehab today for a tour. It's a beautiful place and has a great reputation for brain trauma. More about that later.

Being back to work is exhausting so I've been getting to bed early. Not making too many phone calls, sorry.

Mark was completely unresponsive to me today, but his nurse Frank said he followed commands earlier. His fever is only at 101.4, not nearly what it had been recently. Frank told me that his doctors were discussing going ahead with the shunt tomorrow since they don't think he has an infection. His cultures will probably come back by tomorrow morning, but his white count was normal, if they were elevated it would have shown an infection relatively soon.

I have an appointment to check out Bryn Mawr Rehab Center tomorrow and speak to Janet Belitsky, Ph.D., a neurophychologist. I've talked to her a few times and she has always been very encouraging.

I bought a white board at Staples today, hopefully Mark will be able to write me another note someday soon.

Morning

Looks like the doctors were right. Mark has a fever of 102+ which probably means the fluid they found yesterday was harboring an infection. He's gotten over the other infections and fevers and I have no doubt that he'll get over this one too. Frank is Mark's nurse today and he has as much if not more compassion that his other nurses. Mark's in very good hands today and I'm confident he will get over this hurdle too.

Evening

When the doctors inserted the endoscope into Mark's head, they found scar tissue membranes had formed between the ventricles. They broke up these membranes today. They'd told me two weeks ago that they might need to do this when the four quadrants weren't draining as one and he had to have multiple ventriculostomies. Unfortunately, they found fluid in these sacs and wanted to test the fluid for infection before they put in the shunt. So they sent the fluid off for culture and they need to wait a couple of days to see if anything grows. Since he was doing so well and hadn't had a fever in days, I think this is precautionary and hopefully he'll have his shunt inserted soon. Although with the holiday approaching, it might not be until next Tuesday. He was still recovering from the anesthesia tonight and was back on the ventilator. They will begin to wean him again tomorrow.

Morning

I just got off the phone with Dr. Kobbe. They're going to place Mark's shunt this morning. On his CAT scan they noticed some fluid build up in his other lobes so they are also going into his ventriculostomy with a camera to look around and break up any membranes that may be causing the draining problem. This will fix the drainage problem and allow them to just put in one shunt. He will be performing this procedure with Dr. Liebman, one of the senior partners in the practice.

I did notice that although Mark has had more and longer wakeful times in the last two days, he has also been a little more confused and has had some short term memory loss.

He will be out of surgery by the time I get there at noon and probably very awake by tonight.

Evening

During our noon visit, it was clear Mark wanted to tell me something. So, I put a pen in his hand and put it up to a piece of paper and he wrote "take cuffs off". Since his earlier intervention with removing his ventriculostomy tube, they have kept wrist restraints on him. But he let me know he had an itch which I scratched and he seemed to be fine after that.

Mark was so awake and aware during that time that I actually called one of his friends to come for a short visit. Unfortunately, Mark slept through the entire visit.

They were debating whether to hook him up to the ventilator tonight to give him a rest. They said that he was breathing so well on his own, that they might keep him off of it.

I'm back to work part time so I'll probably only update at night when I get home from the hospital. Even though he's not up to "visiting" just yet, if you want to stop by to see him, give me a call after noon any day and we can schedule a short visit. My cell is 610.716.1791.

Chris

Morning

This one just couldn't wait till tonight. Mark is completely off the respirator. They will leave the trach in for a while just in case. He is receiving extra oxygen in a mask to the trach. I also talked to the resident and they requested permission to schedule the placement of a permanent shunt for early to midweek if all continues to go well. After a couple of days of recuperation, he will then go off to rehab. All of his cultures have been clean for the last 4-5 days and his pneumonia continues to improve.