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!
Sunday, December 31, 2006
Saturday, December 30, 2006
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!
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.
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.
Friday, December 29, 2006
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.
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.
Thursday, December 28, 2006
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.
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.
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.
Wednesday, December 27, 2006
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.
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.
Tuesday, December 26, 2006
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).
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).
Monday, December 25, 2006
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.
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.
Sunday, December 24, 2006
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)
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!!
Saturday, December 23, 2006
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!
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.
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.
Friday, December 22, 2006
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.
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.
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!
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!
Wednesday, December 20, 2006
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.
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.
Tuesday, December 19, 2006
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.
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.
Monday, December 18, 2006
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.
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.
Sunday, December 17, 2006
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
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.
Saturday, December 16, 2006
Evening
Wow, if I only knew it'd be so easy, I would have had Alan stop by sooner! When Mark heard Alan's voice he opened his eyes, lifted his arm and motioned him over to the bed. With his eyes wide open he hung on Alan's every word. He even mouthed a few of his own, but that'll just have to stay between the two of them.
After Alan and Deb left, Mark stayed awake for over an hour, the MOST aware and awake I've seen him yet. He even lifted his arm and put it on mine and squeezed it. He even seemed a little leery of what was going on around him.
Oh, and his ventilator has been on "assist" today and Mark has been initiating all his own breathing.
Can't get much better than that. I'll have a meeting with his physician on Monday and get an idea of his next step.
I printed out some comments from the blog and read them to him but he fell asleep. Please don't take offence, I'm sure it was the delivery.
And you're not gonna believe this, but we needed Mark to sign a form for us, and hoping to get him to mark an X on the paper, we gingerly placed a pen in his right hand, put the pen to paper and without even looking, Mark WROTE his name on the damn paper, a perfect signature exactly like the one on his drivers license.
Go figure. I think he's ready to get out of there.
After Alan and Deb left, Mark stayed awake for over an hour, the MOST aware and awake I've seen him yet. He even lifted his arm and put it on mine and squeezed it. He even seemed a little leery of what was going on around him.
Oh, and his ventilator has been on "assist" today and Mark has been initiating all his own breathing.
Can't get much better than that. I'll have a meeting with his physician on Monday and get an idea of his next step.
I printed out some comments from the blog and read them to him but he fell asleep. Please don't take offence, I'm sure it was the delivery.
And you're not gonna believe this, but we needed Mark to sign a form for us, and hoping to get him to mark an X on the paper, we gingerly placed a pen in his right hand, put the pen to paper and without even looking, Mark WROTE his name on the damn paper, a perfect signature exactly like the one on his drivers license.
Go figure. I think he's ready to get out of there.
Friday, December 15, 2006
Evening
Mark seemed very comfortable tonight. He gave his mom a pinky wave and puckered up for a kiss. It seems the hardest thing he has to overcome is opening those eyes. I'm going to talk to the doctor tomorrow about his medications. I know he was on Dilantin for seizures, although he's never had one and they changed it to another medication because he developed a rash. I'm hoping they can cut back on this and see if it changes his sleepiness.
Early Evening
Just to show us that he knows what's going on, and to show off of course, when Mark hears the nurse enter his room he goes through the whole routine of wiggling his toes, giving the thumbs up etc. before she even asks him to. Unfortunately, he only likes to do this when he doesn't have visitors!
The nurses say he sleeps when I'm there because I comfort him. Ha! Just wait.
Tonight I introduced him to my new friend whose husband is in the room next door with an AVM (the only one who has had something similar to Mark that I've met so far). He opened his eyes, raised his arm and waved. Damn, what a ladies man.
Other than that, all is well and progressing (slowly.....).
Maggie and I are going back tonight for the eight o'clock visit. Will post again.
The nurses say he sleeps when I'm there because I comfort him. Ha! Just wait.
Tonight I introduced him to my new friend whose husband is in the room next door with an AVM (the only one who has had something similar to Mark that I've met so far). He opened his eyes, raised his arm and waved. Damn, what a ladies man.
Other than that, all is well and progressing (slowly.....).
Maggie and I are going back tonight for the eight o'clock visit. Will post again.
Morning
Phew... I talked to Mark's nurse this morning. His temp is down to 100 and he has been responding nicely. They took ventric #3 out today and he only has one remaining. This alone is an amazing step. They planned to begin weaning him from his ventilator today, I hope that's still in the plan. Will keep you posted.
Thursday, December 14, 2006
Evening
Things have been going so well the last few days that Mark had a "peg" put into his stomach so his feeding tube could be removed from his nose. They give the peg 24 hours before they hook up the feeding tube to it. They have removed two of his ventriculostomies and clamped the third. They plan to remove the third one tomorrow and clamp the last one to see if he needs them at all. He had been awake all night last night and his nurse said he was giving her the thumbs up (something they repeatedly tell him to do to check his alertness) before she could ask him to do it. He seemed fine after his surgery and did the winking, hand squeezing and sometimes even a faint smile.
But by the time the eight o'clock visit came around, his eyes were open a little but we were getting absolutely no response from him. After much concern on my part, his nurse Mike took his temp, which was 101. Hopefully after some Tylenol and a cooling blanket we should see a more alert Mark tomorrow. Hopefully this isn't a sign of another infection. I'll call tonight before I get into bed and ask them to check his peg and make sure there's an infection isn't starting.
Damn, just when everything was going so well.
But by the time the eight o'clock visit came around, his eyes were open a little but we were getting absolutely no response from him. After much concern on my part, his nurse Mike took his temp, which was 101. Hopefully after some Tylenol and a cooling blanket we should see a more alert Mark tomorrow. Hopefully this isn't a sign of another infection. I'll call tonight before I get into bed and ask them to check his peg and make sure there's an infection isn't starting.
Damn, just when everything was going so well.
Morning
By now, most of you probably know that Sen. Tim Johnson had surgery for an AVM. Mark's cavernous angioma is a type of AVM, called cavernous because of its location deep in the brain. Here is a link to Yahooo and MSN's coverage of Tim Johnson.
http://www.msnbc.msn.com/id/16199440/
http://news.yahoo.com/s/ap/20061214/ap_on_go_co/johnson_44
http://www.msnbc.msn.com/id/16199440/
http://news.yahoo.com/s/ap/20061214/ap_on_go_co/johnson_44
Wednesday, December 13, 2006
Evening
Mark continues to hold onto his progress today. His intracranial pressures have remained down and his temp has been normal since yesterday. His cycles of alertness have increased in frequency and duration and although he cannot speak because of the trach, he is able to mouth some words. He is still extremely sleepy but this is not unexpected behavior considering the location of his bleed. His favorite thing now is to pucker up for a kiss. When I say reassuring things to him, he even smiles. And he winks at me! I asked him if he had a twitch and he winked again. I asked him to "do what I do" so I could test his vision, and I winked with the other eye, and he did too. I think his vision is better than the doctors had warned us.
I attended the aneurism and AVM support group annual holiday dinner tonight. I was disappointed that they didn’t have a speaker, but while we ate relatively good hospital food, people did come over to our table since we were all new faces. The best part was that I couldn’t tell the former patients from the spouses and friends!
Mark’s mother, Maggie arrived this evening in time for the 8 o’clock visit. Mark was alert the entire time.
We’re waiting out the cultures and when his bacterial infection is gone, we will be proceeding with his final steps that will get him to rehab.
There is another woman that I spend a lot of time with and her husband (the only other patient that has something similar to what Mark has) has an AVM. His is having his own ups and downs and has been in the hospital a week short of Mark. We joke that when our guys are in Bryn Mawr rehab, we’ll be recuperating at Hazeldon! We even went out to lunch today. A big step for both of us.
I attended the aneurism and AVM support group annual holiday dinner tonight. I was disappointed that they didn’t have a speaker, but while we ate relatively good hospital food, people did come over to our table since we were all new faces. The best part was that I couldn’t tell the former patients from the spouses and friends!
Mark’s mother, Maggie arrived this evening in time for the 8 o’clock visit. Mark was alert the entire time.
We’re waiting out the cultures and when his bacterial infection is gone, we will be proceeding with his final steps that will get him to rehab.
There is another woman that I spend a lot of time with and her husband (the only other patient that has something similar to what Mark has) has an AVM. His is having his own ups and downs and has been in the hospital a week short of Mark. We joke that when our guys are in Bryn Mawr rehab, we’ll be recuperating at Hazeldon! We even went out to lunch today. A big step for both of us.
Tuesday, December 12, 2006
Evening
I think Mark is resting well and much more comfortable after they moved the vent from his mouth to his trach. At least that's what they tell me. He’s sure in no hurry to wake the hell up!
As I’ve told you before, he has four ventriculostomies (drains) in his head – yep, right into the space between the skull and brain. They have previously been trying to keep this pressure between 10 and 15, but the lower the better. Tonight, all four pressures were in the low single digits, 1-2-3 and I think the highest was 5. I don’t think they’ve even needed to tap the drains today. This is GREAT news. And you know what else? I don’t even remember the last time they took him down for a CAT scan. AND THERE’S MORE. His temp was normal for the first time in 12 days. So, as soon as his blood culture comes back negative, he will have his peg (the opening for the feeding tube into his stomach) surgery. When the culture is negative for five consecutive days, then the drains will come out and they will place a permanent shunt in his head. Then, off to rehab. That’s when the partying will begin!
As I’ve told you before, he has four ventriculostomies (drains) in his head – yep, right into the space between the skull and brain. They have previously been trying to keep this pressure between 10 and 15, but the lower the better. Tonight, all four pressures were in the low single digits, 1-2-3 and I think the highest was 5. I don’t think they’ve even needed to tap the drains today. This is GREAT news. And you know what else? I don’t even remember the last time they took him down for a CAT scan. AND THERE’S MORE. His temp was normal for the first time in 12 days. So, as soon as his blood culture comes back negative, he will have his peg (the opening for the feeding tube into his stomach) surgery. When the culture is negative for five consecutive days, then the drains will come out and they will place a permanent shunt in his head. Then, off to rehab. That’s when the partying will begin!
Morning
If you’ve gotten here I assume you know that the blog has changed. You may have to create a new user name and password at the worst, or will just need to re-bookmark the page at the least. Mark’s friend, Bill Champ has been helping me with the mechanics of the blog. Now that we’ve made these changes, we’ll be able to add pictures and links. You’ll see these in a few days I hope.
I haven't heard from the hospital today so I'm guessing that he's not going to have his feeding tube surgery today.
I’ll update again tonight.
I haven't heard from the hospital today so I'm guessing that he's not going to have his feeding tube surgery today.
I’ll update again tonight.
Monday, December 11, 2006
Evening
Mark responded well to his tracheotomy today and he came to around 6pm. This means he opens his eyes just a slit and is able to squeeze my hand. He still has a fever. This is excruciatingly slow going and I'm sorry I don't have more positive news. The good things come slowly and the bad things come much quicker.
He has a feeding tube in his nose and his next surgery will be to place a feeding tube directly through his side into his stomach. When he is aware (although he doesn’t really look awake) he responds to the doctor’s commands correctly. Every hour they poke him in the chest and shout his name till he wakes up. So I’m warning you now, he may react negatively in the future to either of these actions.
Thank you to your wonderful comments to the blog. I know he’ll love reading these soon!!
Dick is leaving for California tomorrow morning and Mother Maggie is arriving Wednesday afternoon. I’m sure Mark will be glad to see her.
Chris
He has a feeding tube in his nose and his next surgery will be to place a feeding tube directly through his side into his stomach. When he is aware (although he doesn’t really look awake) he responds to the doctor’s commands correctly. Every hour they poke him in the chest and shout his name till he wakes up. So I’m warning you now, he may react negatively in the future to either of these actions.
Thank you to your wonderful comments to the blog. I know he’ll love reading these soon!!
Dick is leaving for California tomorrow morning and Mother Maggie is arriving Wednesday afternoon. I’m sure Mark will be glad to see her.
Chris
Sunday, December 10, 2006
The second team reporting (Dick). Moderate bounce back today. Fever lower all day. Drains drained. Pressure stayed down. Was awake on and off all day. Had lots of visitors (Chris’s family.) The ENT guy called and we agreed to have a trachoscopy tomorrow (reversible some day) which he says will help with his pneumonia as well as getting the that uncomfortable tube out of his mouth and throat. We had a big laff over the bill for the helicopter -- $9400 for lift off, $450 for mileage (8 mi) and $45 for oxygen. It goes right to the insurance company. The really funny thing is that Chris drove there (couldn’t accompany him in the helo) and arrived at the hospital just as they were delivering him to the ICU. The justification for the helo evac was rush hour traffic!
Morning
They have stopped sedating Mark and he awakens easier and is following some commands. His fever is lower and he is more comfortable. We hope for continued improvement.
Chris
Chris
Saturday, December 09, 2006
Evening
Mark seems to have had his worst day and night yet. He still has a high fever from the infection and now has pneumonia in the right upper lung. The pressure in his four ventriculostomies was rising and his heart rate was in the 160's. They checked him for a heart attack, but this was negative. They are beginning additional antibiotics for the pneumonia. He was uncomfortable enough that they lightly sedated him tonight. Dick, Maggie and I are at our lowest point yet. I'll call the hospital first thing tomorrow and will post again then.
Morning
Courtesy of Dick Seymour:
For those of you who have held back on adding comments for Mark to read later because the process of doing this is too complicated, try this:
[You might want to higlight this whole section, copy and print it for reference while you establish your identity. After that it'll be easy --- just remember your screen name and password]
Scroll down to the end of the first entry on the blog “Friends of Mark W. ….”
You will see on the lower right the word “comments” preceded by zero or a number (depending on how many folk have commented recently) Click on this word
This will take you to a new screen. Ignore all the stuff at the top and click on the “sign up here” near the bottom
This will take you to a new screen. Fill in your email address, next enter a password (twice), pick a display name (the actual name or nickname you want to appear below your comments), do the word verifying step to prove you are a person and not a computer program, approve the terms and conditions and click “continue”
This will bring you back to the comment screen again. Type your greeting to Mark in the box, enter your display name and password and when you’re satisfied with your comment, click the “Login and Publish” button at the bottom.
For those of you who have held back on adding comments for Mark to read later because the process of doing this is too complicated, try this:
[You might want to higlight this whole section, copy and print it for reference while you establish your identity. After that it'll be easy --- just remember your screen name and password]
Scroll down to the end of the first entry on the blog “Friends of Mark W. ….”
You will see on the lower right the word “comments” preceded by zero or a number (depending on how many folk have commented recently) Click on this word
This will take you to a new screen. Ignore all the stuff at the top and click on the “sign up here” near the bottom
This will take you to a new screen. Fill in your email address, next enter a password (twice), pick a display name (the actual name or nickname you want to appear below your comments), do the word verifying step to prove you are a person and not a computer program, approve the terms and conditions and click “continue”
This will bring you back to the comment screen again. Type your greeting to Mark in the box, enter your display name and password and when you’re satisfied with your comment, click the “Login and Publish” button at the bottom.
Friday, December 08, 2006
Evening
Go see Mark's picture on the Angioma Alliance website. http://www.angiomaalliance.org/index.html You might have to wait awhile for his picture to scroll past. You know he's just gonna love it!
Not too much new to report, sometimes I think that’s a good thing. Mark did have a continued fever today, and now has a bacterial infection in his spinal fluid. He's receiving antibiotics directly through his ventriculostomies (the drains in his head). On a positive note, they plan to remove both of the front ventriculostomy tubes soon and they hope he will continue to drain through the rear drains. Since he was awake most of the day yesterday and all through the night, he was sleepy today although easily aroused. He was able to communicate today with horizontal and vertical nods of his head but also threw in a shoulder shrug and raised eyebrows to all the other questions and commands. I think this was a positive sign that he is aware and understands our questions. He really needs to get through this infection.
So, keep up the comments. If you need help leaving a comment and aren't sure how to do it, just go find an eight year old to walk you through it. Or, check the blog tomorrow. Dick Seymour is going to leave detailed instructions for you.
Chris
Not too much new to report, sometimes I think that’s a good thing. Mark did have a continued fever today, and now has a bacterial infection in his spinal fluid. He's receiving antibiotics directly through his ventriculostomies (the drains in his head). On a positive note, they plan to remove both of the front ventriculostomy tubes soon and they hope he will continue to drain through the rear drains. Since he was awake most of the day yesterday and all through the night, he was sleepy today although easily aroused. He was able to communicate today with horizontal and vertical nods of his head but also threw in a shoulder shrug and raised eyebrows to all the other questions and commands. I think this was a positive sign that he is aware and understands our questions. He really needs to get through this infection.
So, keep up the comments. If you need help leaving a comment and aren't sure how to do it, just go find an eight year old to walk you through it. Or, check the blog tomorrow. Dick Seymour is going to leave detailed instructions for you.
Chris
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Thursday, December 07, 2006
Evening
You have the dubious honor of a guest editor tonight. I (Mark’s father) arrived from California this afternoon and found Mark perceptibly improved over my last visit. He had his usual evening body temperature control problems, but has added a new gesture to his vocabulary – a shoulder shrug which we interpret as being somewhere between a yes and a no. As much as he loves to talk, it must be incredibly frustrating to have that ventilator tube down his throat. Both Chris and I are feeling much more optimistic – largely based on the feedback from others with very similar problems who have recovered substantially all of their mental and physical capabilities. We are sure that the enormous ground swell of good thoughts from the small army of Mark’s friends has helped with the turn around. Keep it up!
Morning
I haven't called the hospital yet. Seems every time I do I head right down there even though I can't see Mark till noon. Today I'm restraining myself and will call later, if at all. But I do have some realizations to share with you today. And I didn't even stay in a Holiday Inn last night.
Early in the blog, a man named Kirk left a message about the Angioma Alliance website - you can see his post a couple of nights ago. This website is definitely lay person friendly. Kirk has the same thing that Mark has but he didn't go into his own history. There's no way for me to reach him but if he reads this again, I want him to know that I found more information there than through all of the staff at the hospital. Here goes my take on the whole thing.
I do know that Mark had a bleed in his mid brain which is part of the brain stem. This type usually bleeds into the tissue, not the skull, which takes longer to dissipate. Bleeding here is responsible for certain symptoms, of which Mark seems to have them all. I've copied a couple of paragraphs here, but if you want to know more, go to http://www.angiomaalliance.org/cainfo.html
Brainstem – The brainstem is the lower extension of the brain, located in front of the cerebellum and connected to the spinal cord. It consists of three structures: the midbrain, pons and medulla oblongata. It serves as a relay station, passing messages back and forth between various parts of the body and the cerebral cortex. Many simple or primitive functions that are essential for survival are located here.The midbrain is an important center for ocular motion while the pons is involved with coordinating eye and facial movements, facial sensation, hearing and balance.
The reticular activating system is found in the midbrain, pons, medulla and part of the thalamus. It controls levels of wakefulness, enables people to pay attention to their environments, and is involved in sleep patterns.
If anyone out there has a digital picture of Mark, please email it to castellano@proofmark.com. And if anyone else can tell me how to post it here, it would be most appreciated.
One last note. I created this blog for all of his friends to keep updated and post notes to him. All of your kind posts about me are extremely touching, but this should be all about Mark. Thank you all for keeping up the posts. MARK WILL JUST LOVE READING THEM SO DON'T HESITATE TO POST EVERY DAY!!! I want someday for all of you to have a chance to meet each other.
Chris
Early in the blog, a man named Kirk left a message about the Angioma Alliance website - you can see his post a couple of nights ago. This website is definitely lay person friendly. Kirk has the same thing that Mark has but he didn't go into his own history. There's no way for me to reach him but if he reads this again, I want him to know that I found more information there than through all of the staff at the hospital. Here goes my take on the whole thing.
I do know that Mark had a bleed in his mid brain which is part of the brain stem. This type usually bleeds into the tissue, not the skull, which takes longer to dissipate. Bleeding here is responsible for certain symptoms, of which Mark seems to have them all. I've copied a couple of paragraphs here, but if you want to know more, go to http://www.angiomaalliance.org/cainfo.html
Brainstem – The brainstem is the lower extension of the brain, located in front of the cerebellum and connected to the spinal cord. It consists of three structures: the midbrain, pons and medulla oblongata. It serves as a relay station, passing messages back and forth between various parts of the body and the cerebral cortex. Many simple or primitive functions that are essential for survival are located here.The midbrain is an important center for ocular motion while the pons is involved with coordinating eye and facial movements, facial sensation, hearing and balance.
The reticular activating system is found in the midbrain, pons, medulla and part of the thalamus. It controls levels of wakefulness, enables people to pay attention to their environments, and is involved in sleep patterns.
If anyone out there has a digital picture of Mark, please email it to castellano@proofmark.com. And if anyone else can tell me how to post it here, it would be most appreciated.
One last note. I created this blog for all of his friends to keep updated and post notes to him. All of your kind posts about me are extremely touching, but this should be all about Mark. Thank you all for keeping up the posts. MARK WILL JUST LOVE READING THEM SO DON'T HESITATE TO POST EVERY DAY!!! I want someday for all of you to have a chance to meet each other.
Chris
Wednesday, December 06, 2006
Evening
This is a good site: http://www.angiomaalliance.org/cainfo.html Mark's cavernoma is located in the mid-brain, which is part of the brain stem.
Hey! How about some better news? Mark still has some swelling but his MRI came back with no signs of a stroke. His fever is down but he's still wearing a cooling blanket. This is a great invention to those of us with hot flashes, but I'm sure Mark is hating every minute of it.
I called my old friend Patty Walsh who works at Jefferson. She pulled a few strings and two very important looking Patient Advocates arrived within the hour and escorted me to a conference room. All eyes were on us, walking down the hall to Mark's room like a senior mod squad. I think it brought the fear of god to the nurses station. They gave me a lot of good information and the day got better from there.
During our six o'clock visit, the nurse repeatedly told Mark to wake up. After a few times, she said "wake up, Chris is here" and he did. He stayed awake (as well as he could) for the entire half hour. I asked him if he understood what I was saying and he opened his eyes wide - that's our sign. Later, during the eight o'clock visit, his nurse asked the same old questions, wiggle your toes, give me two fingers, give me a thumbs up. Well, he wiggled his toes and fingers of his right hand, but more importantly, for the first time in days, he was able to do the same, although weaker, on his left side.
Mark's attending physician he said that he may have some visual imparement, but he's hoping for more progress in the coming days.
I know this has happend before, but I'm going to get just as damned excited as I did all the other times. Hope you all do too.
Damon and Derrek, people have been asking how this all started, and I'd like you guys to write the beginning of the story. They're the ones who actually saved Mark's life and got him to the emergency room.
Chris
Hey! How about some better news? Mark still has some swelling but his MRI came back with no signs of a stroke. His fever is down but he's still wearing a cooling blanket. This is a great invention to those of us with hot flashes, but I'm sure Mark is hating every minute of it.
I called my old friend Patty Walsh who works at Jefferson. She pulled a few strings and two very important looking Patient Advocates arrived within the hour and escorted me to a conference room. All eyes were on us, walking down the hall to Mark's room like a senior mod squad. I think it brought the fear of god to the nurses station. They gave me a lot of good information and the day got better from there.
During our six o'clock visit, the nurse repeatedly told Mark to wake up. After a few times, she said "wake up, Chris is here" and he did. He stayed awake (as well as he could) for the entire half hour. I asked him if he understood what I was saying and he opened his eyes wide - that's our sign. Later, during the eight o'clock visit, his nurse asked the same old questions, wiggle your toes, give me two fingers, give me a thumbs up. Well, he wiggled his toes and fingers of his right hand, but more importantly, for the first time in days, he was able to do the same, although weaker, on his left side.
Mark's attending physician he said that he may have some visual imparement, but he's hoping for more progress in the coming days.
I know this has happend before, but I'm going to get just as damned excited as I did all the other times. Hope you all do too.
Damon and Derrek, people have been asking how this all started, and I'd like you guys to write the beginning of the story. They're the ones who actually saved Mark's life and got him to the emergency room.
Chris
Later Morning
I'm heading to the hospital now. Mark had a CAT scan during the night but I don't know the results. Only one of his ventricular drains is draining. His ventriculars are dry but his brain is still swollen. They've given him medication to reduce the edema. He's responding less. Mark is having an MRI to rule out a stroke this morning. I also have a meeting scheduled with his attending physician sometime this afternoon. Finally.
Chris
Chris
Morning
Thank you to all THREE of you who left a message on this blog. I created this blog more as a time line for Mark than for us. I thought it would be a good way when he's able to read this for him to know that all his friends were out there wishing him well. I know that you need to sign up and sign in, blah blah blah (although I can't see that screen). This is a two way street. I know some of you have never been to a blog and may be intimidated. Yes, it's a pain. But yes, you need to do it anyway. And often.
In trying to keep everyone's spirits up, and partly trying to erase it from my mind, I've edited out all the crappy things that have happened, the really scary stuff, the insensitive doctors, the cold nurses, the lack of communication, the really dark hours that I thought would never end, and the horror I have felt. My only concern is for Mark to make a full recovery. I've never been so scared in my life; trying not to think about going on with my life without the most wonderful man in the world.
Chris
In trying to keep everyone's spirits up, and partly trying to erase it from my mind, I've edited out all the crappy things that have happened, the really scary stuff, the insensitive doctors, the cold nurses, the lack of communication, the really dark hours that I thought would never end, and the horror I have felt. My only concern is for Mark to make a full recovery. I've never been so scared in my life; trying not to think about going on with my life without the most wonderful man in the world.
Chris
Tuesday, December 05, 2006
Evening
Mark's Diagnosis: scroll 1/3 of the way down the page to section 4, Cavernous Angioma
http://www.emedicine.com/med/topic3469.htm
Another day of highs and lows. I had a consultation with the Head Head-Resident, Dr. Birkness, and he gave me a lot of information and answered my questions. Mark did in fact have a drain placed in both rear ventricles this morning. They were both draining much more than the two in the front had so I hope we're making progress. Dr. Birkness also said they he has never seen anyone who needed four drains and that Mark has had almost every complication there is. So, this must be a good sign, because he's gotten past all the hurdles so far.
Dr. Birkness also told me that each time Mark is anesthetized, it takes longer for him to wake up and not to expect too much until tomorrow morning. But only two hours post surgery, his eyes were open a little and he did squeeze my hand. Soon after, he was fast asleep again. Mark's receiving steroids to reduce the swelling in his brain, which has induced temporary diabetes. Now he has to have his blood sugar tested and he receives insulin. They expect this to reverse itself after he's weaned off of the steroids.
Mark's Hospital http://www.jeffersonhospital.org/neuroscience/
I've left the best till last. My dear friend, Sandy Kauffman, put me in touch with Janice Belitsky, Ph.D., who works at Bryn Mawr Rehab, one of the best brain rehab centers in the US. We talked on the telephone for an hour and she reassured me that Mark will do extremely well with rehab. She said the more intelligent a person is, the more he's likely to get a good result.
Rehab Center http://www.mainlinehealth.org/br/
Mark still has a long way to go. They hope that with the reduced pressure and swelling he will wake up tomorrow. Hopefully there will be steady progress from here.
Chris
http://www.emedicine.com/med/topic3469.htm
Another day of highs and lows. I had a consultation with the Head Head-Resident, Dr. Birkness, and he gave me a lot of information and answered my questions. Mark did in fact have a drain placed in both rear ventricles this morning. They were both draining much more than the two in the front had so I hope we're making progress. Dr. Birkness also said they he has never seen anyone who needed four drains and that Mark has had almost every complication there is. So, this must be a good sign, because he's gotten past all the hurdles so far.
Dr. Birkness also told me that each time Mark is anesthetized, it takes longer for him to wake up and not to expect too much until tomorrow morning. But only two hours post surgery, his eyes were open a little and he did squeeze my hand. Soon after, he was fast asleep again. Mark's receiving steroids to reduce the swelling in his brain, which has induced temporary diabetes. Now he has to have his blood sugar tested and he receives insulin. They expect this to reverse itself after he's weaned off of the steroids.
Mark's Hospital http://www.jeffersonhospital.org/neuroscience/
I've left the best till last. My dear friend, Sandy Kauffman, put me in touch with Janice Belitsky, Ph.D., who works at Bryn Mawr Rehab, one of the best brain rehab centers in the US. We talked on the telephone for an hour and she reassured me that Mark will do extremely well with rehab. She said the more intelligent a person is, the more he's likely to get a good result.
Rehab Center http://www.mainlinehealth.org/br/
Mark still has a long way to go. They hope that with the reduced pressure and swelling he will wake up tomorrow. Hopefully there will be steady progress from here.
Chris
Past Updates
Tuesday morning, December 05, 2006
I received a call early this morning from the head resident. They’re somewhat like college students, you only hear from them when they want money. Mark’s two front drains aren’t sufficiently draining the fluid from the lobes so he’s in surgery now to place a ventriculostomy tube (I’m not sure if they’re putting it in on one side or both) in his back lobe(s). This is a little more dangerous, but it’s the next step. They are still hopeful that once his cerebral spinal fluid is drained and there is less pressure on the brain, things will vastly improve. And from what I can see in the waiting room, they have lots of practice and success with these procedures. They expect the procedure to be completed around 10-11am. I will be at the hospital by noon so there won’t be an update until tonight.
I’m getting some returned emails, so if you know of anyone who isn’t receiving this, but would like to, please forward it on. In the meantime, we need to think about a blog.
Chris
Monday, December 4, 2006
This contact list has grown so much that I needed to add another group! It’s amazing how many people Mark can call his friend, and I hope you’re as proud as I am to be included. Keep sending me the emails. I’m sure Mark will enjoy reading them when he is better. They certainly make me feel good.
Mark didn’t have a good night last night and had six CAT scans between 8pm last night and 10am this morning. They’re still trying to control the fluid in his brain that is causing the pressure that’s making him sleepy but they weren’t successful using drugs. This morning around 10 they inserted a second drain in his brain. They both worked briefly then stopped due to the fact that the two frontal things (I can’t remember the name) were now dry. There are two more cavities in the back but placing tubes in those is more risky and has to be done in the OR. Fortunately, this evening the new drain began to drain again. Hopefully, some of the fluid from the back is migrating to the front and is being drained.
His fever was also beginning to climb again tonight. They’re waiting for the blood they drew yesterday to come back from the lab. But in the meantime, he is on antibiotics.
His neurosurgeon was very hopeful this morning that the new drain would bring him around he hoped that this evening would be a repeat of his progress of Saturday night. Unfortunately, this wasn’t to be. He was following commands with a lot of persuasion. His right side is stronger than the left, which I take to mean his left side is weak. His nurse said he was hitting every bump in the road. He seems comfortable enough (considering everything he’s going through) and is not in any pain.
I’m sure he’s going to want to know who the hell ERNEST is. I’ll save that for tomorrow.
If anyone wants to add their email address to this update, please send me an email directly. It’s much easier for me to add your name directly from the email.
Chris
Sunday, December 3, 2006
It turns out that Mark’s medical self-intervention last night was not a good thing. When I called the hospital this morning they said he had again become very sleepy and difficult to arouse and would need the drain replaced. When I arrived at the hospital at 10am they were about to begin the procedure. He again needed general anesthesia and intubation. His head drained well but we were still not able to get him to wake up. He developed a fever of 103.9 and they did blood tests to see if they could find the reason for it. I think it’s a bladder infection since his urine is bright RED. They placed a cooling blanket on him and his temperature returned to normal later in the evening. At 8pm they sent him for another CAT scan and found no additional bleeding or changes and don’t know why he wouldn’t wake up. They increased his steroids to reduce the swelling in his brain. They continue to say he’s doing well. He was first placed under general anesthesia on Wednesday night and Saturday evening was the most wakeful I’ve seen him. Hopefully this is just a matter of time and we need a little more patience.
So, if there are any believers out there, maybe a few prayers wouldn’t hurt.
I will continue to send an update each evening when I return from the hospital.
Thank you all very much.
Chris
Saturday, December 3, 2006
Dick and I spent most of the day at Mark's bedside. Since Dick is leaving in the morning to return to California he was resigned to the fact that he may have to leave without seeing Mark actually awake during his entire visit. We were watching the Army Navy football game in his room, when his nurse asked us to step out while she assessed him for her shift change. When we returned only 15 minutes later Mark was more awake than we had ever seen him. The first thing he reached for was the TV remote control and began his usual routine of watching every show available for 5 minutes at a time. We don’t know what his nurse did, but it sure worked. His friend Alan and his wife Deb stopped in to visit and he knew who they were and even said their names. As the afternoon went on, Mark stayed awake and only nodded off occasionally. I called the hospital tonight around 11pm before I went to bed and the nurse said that Mark was even more awake and aware and had even pulled out the drainage tube from his head that was stitched to his scalp with multiple stitches. He even apologized to her and said that he had been bad. Unfortunately, he now has wrist restraints because they think that his catheter was the next thing to go! We’re keeping our fingers crossed that this wakefulness continues and is the beginning of a quick road to recovery.
I have a conference with his physician tomorrow and I hope to have even more good news to share.
It’s very comforting to know you’re all out there thinking and praying for Mark.
Chris
December 1, 2006
Mark is doing well neurologically, although he doesn’t arouse easily due to the swelling of his brain. We talked to a neurologist (at 15, this one was older than the last one) who said that he was doing extremely well neurologically and that the swelling, like any other bruise, would take a few days to go down. When Mark did wake up a few times last night, we found his short term memory to be markedly better and I think his double vision is vastly improved. All around, I think this is terrific progress. The best part of the night was when his case worker talked to me and his father, Dick, and told us to make plans for his departure from the hospital!!! She thinks they will recommend intensive inpatient rehab due to his young age. Of course, everything depends on his insurance company.
As a parent, I can only imagine the strain on his parents. How his dad is holding up so well amazes me. He’s hard a work every minute making sure Mark will have a seamless, worry free, and smooth recovery.
His mother Maggie, who lives in Nantucket is waiting for Mark’s discharge so she can be here to help him when he returns home. I know it must be very difficult for her not being here and we try to keep her updated often.
Mark was moved to an intermediate unit last night and will probably spend 4-5 days there until they discharge him to rehab. He’s in room 607 of the Jefferson Center for Neuroscience, at 9th & Walnut Sts. in downtown Philadelphia. When Mark is awake and able to have visitors, I will let you all know. In the meantime, as I have told a lot of you, please please feel free to call me at any time on either my cell 610.716.1791 or Mark’s cell which I always have with me.
I don’t know most of the folks who have emailed or called me, but I’m sure Mark will be very touched when he sees how many people are thinking and praying for him.
And as I found out last night, the prayers of even the unfaithful are sometimes answered.
We will keep you posted and thank you all again for your concern for our friend Mark.
Thursday, November 30, 2006
As some of you know, Mark is in the Neuroscience Intensive Care Unit of Jefferson Hospital. He had an incident on Wednesday of bleeding in his brain due to an Arteriovenous Malformation. He was taken to Lankanau Hospital, and from there they flew him to Jefferson. His major symptoms are double vision and extreme short term memory loss, along with a very odd personality change, sort of like a cross between Charlie Brown and Charlie Chaplin.He's being transferred to an intermediate unit today at the same hospital; it's far too soon to know a discharge date. Please feel free to call me on my cell: 610.716.1791 or Mark's cell: 904.687.9876 for an update. Thank you all for your support.Chris
I received a call early this morning from the head resident. They’re somewhat like college students, you only hear from them when they want money. Mark’s two front drains aren’t sufficiently draining the fluid from the lobes so he’s in surgery now to place a ventriculostomy tube (I’m not sure if they’re putting it in on one side or both) in his back lobe(s). This is a little more dangerous, but it’s the next step. They are still hopeful that once his cerebral spinal fluid is drained and there is less pressure on the brain, things will vastly improve. And from what I can see in the waiting room, they have lots of practice and success with these procedures. They expect the procedure to be completed around 10-11am. I will be at the hospital by noon so there won’t be an update until tonight.
I’m getting some returned emails, so if you know of anyone who isn’t receiving this, but would like to, please forward it on. In the meantime, we need to think about a blog.
Chris
Monday, December 4, 2006
This contact list has grown so much that I needed to add another group! It’s amazing how many people Mark can call his friend, and I hope you’re as proud as I am to be included. Keep sending me the emails. I’m sure Mark will enjoy reading them when he is better. They certainly make me feel good.
Mark didn’t have a good night last night and had six CAT scans between 8pm last night and 10am this morning. They’re still trying to control the fluid in his brain that is causing the pressure that’s making him sleepy but they weren’t successful using drugs. This morning around 10 they inserted a second drain in his brain. They both worked briefly then stopped due to the fact that the two frontal things (I can’t remember the name) were now dry. There are two more cavities in the back but placing tubes in those is more risky and has to be done in the OR. Fortunately, this evening the new drain began to drain again. Hopefully, some of the fluid from the back is migrating to the front and is being drained.
His fever was also beginning to climb again tonight. They’re waiting for the blood they drew yesterday to come back from the lab. But in the meantime, he is on antibiotics.
His neurosurgeon was very hopeful this morning that the new drain would bring him around he hoped that this evening would be a repeat of his progress of Saturday night. Unfortunately, this wasn’t to be. He was following commands with a lot of persuasion. His right side is stronger than the left, which I take to mean his left side is weak. His nurse said he was hitting every bump in the road. He seems comfortable enough (considering everything he’s going through) and is not in any pain.
I’m sure he’s going to want to know who the hell ERNEST is. I’ll save that for tomorrow.
If anyone wants to add their email address to this update, please send me an email directly. It’s much easier for me to add your name directly from the email.
Chris
Sunday, December 3, 2006
It turns out that Mark’s medical self-intervention last night was not a good thing. When I called the hospital this morning they said he had again become very sleepy and difficult to arouse and would need the drain replaced. When I arrived at the hospital at 10am they were about to begin the procedure. He again needed general anesthesia and intubation. His head drained well but we were still not able to get him to wake up. He developed a fever of 103.9 and they did blood tests to see if they could find the reason for it. I think it’s a bladder infection since his urine is bright RED. They placed a cooling blanket on him and his temperature returned to normal later in the evening. At 8pm they sent him for another CAT scan and found no additional bleeding or changes and don’t know why he wouldn’t wake up. They increased his steroids to reduce the swelling in his brain. They continue to say he’s doing well. He was first placed under general anesthesia on Wednesday night and Saturday evening was the most wakeful I’ve seen him. Hopefully this is just a matter of time and we need a little more patience.
So, if there are any believers out there, maybe a few prayers wouldn’t hurt.
I will continue to send an update each evening when I return from the hospital.
Thank you all very much.
Chris
Saturday, December 3, 2006
Dick and I spent most of the day at Mark's bedside. Since Dick is leaving in the morning to return to California he was resigned to the fact that he may have to leave without seeing Mark actually awake during his entire visit. We were watching the Army Navy football game in his room, when his nurse asked us to step out while she assessed him for her shift change. When we returned only 15 minutes later Mark was more awake than we had ever seen him. The first thing he reached for was the TV remote control and began his usual routine of watching every show available for 5 minutes at a time. We don’t know what his nurse did, but it sure worked. His friend Alan and his wife Deb stopped in to visit and he knew who they were and even said their names. As the afternoon went on, Mark stayed awake and only nodded off occasionally. I called the hospital tonight around 11pm before I went to bed and the nurse said that Mark was even more awake and aware and had even pulled out the drainage tube from his head that was stitched to his scalp with multiple stitches. He even apologized to her and said that he had been bad. Unfortunately, he now has wrist restraints because they think that his catheter was the next thing to go! We’re keeping our fingers crossed that this wakefulness continues and is the beginning of a quick road to recovery.
I have a conference with his physician tomorrow and I hope to have even more good news to share.
It’s very comforting to know you’re all out there thinking and praying for Mark.
Chris
December 1, 2006
Mark is doing well neurologically, although he doesn’t arouse easily due to the swelling of his brain. We talked to a neurologist (at 15, this one was older than the last one) who said that he was doing extremely well neurologically and that the swelling, like any other bruise, would take a few days to go down. When Mark did wake up a few times last night, we found his short term memory to be markedly better and I think his double vision is vastly improved. All around, I think this is terrific progress. The best part of the night was when his case worker talked to me and his father, Dick, and told us to make plans for his departure from the hospital!!! She thinks they will recommend intensive inpatient rehab due to his young age. Of course, everything depends on his insurance company.
As a parent, I can only imagine the strain on his parents. How his dad is holding up so well amazes me. He’s hard a work every minute making sure Mark will have a seamless, worry free, and smooth recovery.
His mother Maggie, who lives in Nantucket is waiting for Mark’s discharge so she can be here to help him when he returns home. I know it must be very difficult for her not being here and we try to keep her updated often.
Mark was moved to an intermediate unit last night and will probably spend 4-5 days there until they discharge him to rehab. He’s in room 607 of the Jefferson Center for Neuroscience, at 9th & Walnut Sts. in downtown Philadelphia. When Mark is awake and able to have visitors, I will let you all know. In the meantime, as I have told a lot of you, please please feel free to call me at any time on either my cell 610.716.1791 or Mark’s cell which I always have with me.
I don’t know most of the folks who have emailed or called me, but I’m sure Mark will be very touched when he sees how many people are thinking and praying for him.
And as I found out last night, the prayers of even the unfaithful are sometimes answered.
We will keep you posted and thank you all again for your concern for our friend Mark.
Thursday, November 30, 2006
As some of you know, Mark is in the Neuroscience Intensive Care Unit of Jefferson Hospital. He had an incident on Wednesday of bleeding in his brain due to an Arteriovenous Malformation. He was taken to Lankanau Hospital, and from there they flew him to Jefferson. His major symptoms are double vision and extreme short term memory loss, along with a very odd personality change, sort of like a cross between Charlie Brown and Charlie Chaplin.He's being transferred to an intermediate unit today at the same hospital; it's far too soon to know a discharge date. Please feel free to call me on my cell: 610.716.1791 or Mark's cell: 904.687.9876 for an update. Thank you all for your support.Chris
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