Later Evening

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

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

Early Evening

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

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

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

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

Afternoon & Evening

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

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

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

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

Evening

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

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

Afternoon

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

Morning

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

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

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

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

Evening

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

Afternoon

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

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

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

Later Evening

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

Evening

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

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

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

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

Evening

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

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

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

Evening

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

Morning

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

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

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

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

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

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

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

MERRY CHRISTMAS TO ALL!!