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.
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