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.

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.

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.

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.

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

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.

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!

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.

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

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