Thursday Evening

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

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

Evening

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

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

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

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

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

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

Morning

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

Evening

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

Morning

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

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

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

Evening

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

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

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

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

Chris

Morning

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

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