Saturday, October 17th, 1:00pm

Ken had another stroke last night. A fairly large one. That is the third one in a month and a half.

We went to Fairfax Hospital via 911 Ambulance at around 10pm when Ken was unable to walk or feel anything at all on his right side. Prior to this, when being discharged on Thursday from the stroke center, Ken was able to walk fine and only had slight numbness on his right hand.

He has been checked into Neuroscience ICU and will likely reamin there for the rest of this week. The surgeon suspects that he will be discharged from there into rehab, as right now, he has no use of his right side at all. I don't even know how long until he is back at the house. I guess it could be months. I think I may have to take some family medical leave from work, I just don't know how productive I am going to be the next few weeks. I'll probably need to sell one of the cars, too. No need to pay two car notes.

He was having a cerebral angiogram during todays 11-1 visiting hours, but I'll be there during this evenings hours.

Friday, October 16th, 3:30pm

Well, let's see . . .

The cough is really bad now. I took his temperature and it's 98.6, so I guess he isn't sick. I broke down and gave him Niquil, but doesn't seem to do anything.

He says that he has a headache, and that the area under his left eye is hurting. This is the same area that has been yellowing I mentioned earlier.

Also he has cold sweats. He says he is cold, but the sheets and pillows are damp from sweat. I flipped the pillow and got him new sheets, and he has gone back to sleep.

Also, I can't get him to eat. I've been giving him fruit juices, V8, V8 fusion, but that is all he will drink. I'm afraid that if I can't get him to eat something we are going to have to go back to the hospital. Or maybe I need to check him into a rehabilitation clinic.

Friday, October 16th, 10:45am

All is still well.

Ken slept most of yesterday. He came downstairs to watch some TV around 8pm and went back to bed around 10pm. His mobility is really quite good. Very steady on his feet and no ballance or dizzy issues at all. (I make him crawl up and down stairs for now)

He was coughing A LOT during the night. That kind of cough where you have just exhaled, and when you go to inhale, you feel this tickle in your chest, and you cough by instinct, but you don't have any air in your lungs to inhale after the cough so you sort of 'choke' and wheeze to try and cough and catch your breath at the same time.

We're trying to avoid cough medicine if we can. Not sure how it will interefere with the Kepra 500mg 2x per day.

He has little pain - a bit of a headache from coughing hard.

Speech seems about the same. However, he is writing a bit more. 2 or 3 words. Still having trouble remembering how to form the letters with a pen. Also, can't tell when the pen is upside-down. He will write with the wrong end for quite a few moments before realizing the pen is upside down. Noteworthy.

He is still sleeping and I imagine he will for a few more hours.

More later.

Home

Ken is home safe and sound! More soon.

Thursday, October 15th, 9:45am

I didn't have a chance to post any update last night - I was just too tired.

Last night's visit went okay. Still no improvement in speech, and the ability to swollow is getting worse, if anything. Also, he has developed a very painful cough and rash.

I got there at 5:45pm, and after Ken described how his day went, I asked about the cough and the rash he had been experiencing in the past few days. He said that both were very bad and very painful. I asked him if he had told the nurse, and he shrugged his shoulders (this usually means, "I did but they can't understand me"). So I pressed the nurse call button.

The box that the button is on, also has a speaker and a microphone. Someone comes on and says, "Do you need something?"

WHAT THE HELL KIND OF QUESTION IS THAT!!!!!!!!!!!!!!!!!!!!!!!!!!!

DONT THEY KNOW THE PATIENT IN 275-2 CAN'T SPEAK??????????

So, I said, "Can you please send a nurse in for Ken Hauser?" "She'll be there in a minute."

Fine.

Cut to - 30 minutes later. No nurse.

Ken has spent a total of 9 days at this hospital, counting the surgery last week, and we have NEVER had the same nurse twice. AND never had the same night nurse twice. All of the nurses have been very nice and kind, but the LAZIEST group of bitches I have ever encountered in my life.

Finally, I walk to the nurse stationfor help only to find about 8 nurses in a circle talking about how drunk they got last weekend and how they are not going to let that happen again this weekend! (giggles all around)

I stand at the window, but say nothing. I'm looking at them. No less than 6 of them make eye contact with me and IMMEDIATELY look away and/or turn their back to the window.

I ask, "Is Lori here?" (That is the name on the board next to Ken's bed saying who his nurse is)

One of the girls turns to face me with a look on her face as if I had just called her mother a whore and says, "She went home", then turns back to the group.

I go back to Ken's room because I found myself reaching for my can of whop-ass, which is a bad sign, and that is not going to help anyone. It is now around 6:30. No one has been in to see Ken. He says the last time he saw someone was when they came to take his lunch tray away at around 3:30pm. No wellness check. No blood pressure/temperature check. Nothing. Since he is on an IV that has to be disconnected before he can get up, that also means no bathroom visits either (can't take the IV with him as the arm holding the bag is not movable)

Now, Lori shows up . . . I say I thought you went home, she said, AND I QUOTE, "That was black Lori"

Okay, whatever.

I say that ken has a really bad and painful cough.

Lori's response: "Wow, really?"

I say yes, and that he has a very bad rash on his back that itches terribly. He has had it for about 5 days. Can he please have some cortozone or benedril to help with the itching.

Lori's response: "Oh, I don't know"

Todd: "Did a Doctor come today?"
Lori: "Um, I'm not sure"
Todd: "Did speech therapy come today?"
Lori: "Oh, let me look. I don't see anything"
Todd: "Did physical therapy or occupational therapy come today?"
Lori: "Yea, I really don't know."

Long pause . . . . .

Lori: "So do you guys need anything?"

I don't know what else to do. I tell Ken that I will get some Vicks 44D and some Corizone cream at the store and bring it with me the next morning (today).

I go home, and Ken calls me around 9:30. Usually, when we have the phone calls, since we are not face to face, I ask a lot of yes/no questions, and he is able to answer them.

Todd: "Hi, sweetie!"
Ken: "Hi!"
Todd: "Did you get your night medicines?"
Ken: "uh huh" (yes)
Todd: "Did doctor bernard come by?" <--- I no longer capitolize his name
Ken: "uh huh" (yes)
Todd: "Oh, good! Are you going to have that 2nd MRI tomorrow?"
Ken: "uh huh and guess what"
Todd: "What?"
Ken: "Home!"
Todd: "Home? He said you can come home?"
Ken: "Yes!"
Todd: "When?"
Ken: "Tomorrow!"

I'm going to need to clarify this when I visit today at 11am, but I think the doctor is going to release him today. I find that kind of hard to believe. No one called me to tell me. Wouldn't they call the POC to let them know to come by and get him. Someone needs to bring him clothes to wear home. Surley they did not ask Ken to tell me. Why would they ask someone who can not speak to dictate discharge info to the POC?

How can he come home? He can't swollow? He is on an IV? I think he has a serious chest infection and no one seems to care.

Those are my thoughts so far. I've got to get back to work. More updates this afternoon.

Wednesday, October 14th, 2:00pm

Just got back from the first visit for today. Still doing okay.

His mouth is really not doing very well. He says he can not swollow anyting accept liquids. We tried some pudding, and after two spoons said no more.

Amy, is the info in this website something I should be worried about? He keeps talking about how much his back itches and burns still.

http://www.dilantin-side-effects.com/?gclid=CMyKmbSMvZ0CFdFL5Qodsho6hQ

Occupational Therapist came by today and Ken was able to write his name with his left and right hand. Slow going, but really did good!

He also was put back on the IV of potassium chlorate today as well.

I do not expect he will be released this week.

Wednesday, October 14th, 9:00am

Ken called last night around 9:45, I think, but we were not really able to talk about anything. It is a lot easier to communicate with him face-to-face.

I got an idea from my sister, Amy, to make a word board. I'm going to work on that today and take with me this morning. I'll make some sheets of legal paper with words on them . . . maybe one for nouns, one for verbs, one for places of his body, one for people (he has a real problem with the different doctors names). Then he can use to point at the word he wants.

I woke up around 5am this morning and got briefly worried about something I "think" I heard Ken say during yesterday's visit.

The nurse had taken him off the IV (potassium chloride, I think) and he was drinking a lot of water, which is good. I asked him if he was going to the bathroom (#1) and he shook his head 'No'. I re-phrased the question to clarify by saying, "Have you gone to the bathroom today?" Again, 'No'. The night nurse was there, and overheard us and said that he would keep an eye on him.

Then I started thinking of other little things I had noticed. He has been complaining about how is back itches VERY badly, and hurts. When I ask where, he shows me, and it is right where the kidneys are. He says it started right when they gave him the IV of Dilantin (anti-sesure med) and has not gone away.

Also, I noticed yesterday that he has yellowing/bruising around his left eye. Mostly on the bottom lid.

So, now I'm worried so I call the nurse station at the stroke center. I ask to speak to Ken's nurse, and they tell me that he went home around 11pm because he was sick. Nice.

OH, ALSO - in regards to what I wrote yesterday about him choking when he lies on his back. Amy mentioned he might be aspirating, and I recalled that Ken said (while we were still home last Friday) that dinner made his throat hurt. It was his first solid food, and he only ate two bites, and handed me that plate and pointed at his throat, and said it hurts. He told me yesterday that that was when the coughing at night started, and how sleeping on his side was all he could do to stop it.

I tell them all my worries, and they said they would tell his day nurse when she gets here. I asked if they could go and check on him, and she said, "There is more than one nurse on the floor, sir. I'm sure someone has checked on him."

More soon!

Tuesday, October 13th, 9:20pm

Just got back from the evening visiting hours. Ken was in good spirits. I like watching his face light up when Bill and Helen (his Mom and Dad) arrive!

He is having a hard time breathing when flat on his back. He was having an MRI done today, and he said he was coughing and choking when lying flat (and not able to verbaly explain why) and says it happens if he sleeps on his back too.

Speech was about the same. He seems to be repeating the same word a lot when trying to describe any noun. Today was keezy. He will say (and I am NOT mocking him at all, just relaying his speech patterns) he will say things like, "me . . . you . . . keezy-keezy mooshy . . ." He is really trying very hard, and I think is making a little progress each time, and we both are learning patience.

Tuesday, October 13th 3:00pm

I JUST HEARD FROM THE NEUROSURGON!!!

Dr. Deshmuhk (the one that did the surgery) has just visited with Ken. He was away this weekend on holiday and only just got back in town today.

He has reviewed everything, and he is now following Ken closely. Because Ken was on the Plavix (blood thinner) for so long, his body kind of was accustomed to it. We had to stop the plavix 10 days before the surgery, and he believes that that has placed him at a higher risk for stroke since his blood-flow (viscosity) has changed.

They are going to keep him there for the rest of this week with a possible discharge on Friday depending on how things go.

Ken's speech is bad, but Dr. Deshmuhk is confident that because the strokes are so small, that he will regain his speech through therapy. They just need to watch him closely for more strokes.

Please, God, don't let him have any more!

Tuesday, October 13th, 1:50pm

This was a difficult visit. I am having a hard time communicating with Ken and I fear I may be upsetting him when I can't understand.

The doctor has ordered an EEG, CT Scan and MRI. The EEG and CT Scan were performed already this morning.

The speech therapist will be visiting him this afternoon, also.

I'm feeling a lot of anger at "The System" and I think it is leaking out a little in my attitude. I need to get myself in check.

More this evening.

Tuesday, October 13th 9:30am

After Ken's surgery on October 5th, we were released on October 8th. Ken was feeling okay, but his speech was getting progressivly worse. On Sunday, he was not able to form a sentence at all, and was not eating, so I called the Neurosurgeon on-call, and he told us to go to Fairfax Hospital Emergency Room and he would meet us there. They did a CT Scan w/ contrast and discovered that Ken had had another stroke. He was admited Sunday afternoon, and is in the Stroke Center at Fairfax Hospital.

Ken called last night at around 10pm and again at 11pm. Dr. Bernad finally made it by his room last night. He will not be released today (Tuesday) as Ken had hoped.

I still have NOT heard from the neurosurgeon, Dr. Deshmukh yet.

Ken's speech seems to be much worse in the evening, and overall doesn't really seem to be improving.

His pain is being well managed, and he is comfortable.

I will be at the hospital today at 11am, and will update here with additional information.

October 5th

Background:

Ken has an arterial disease known as MoyaMoya. The internal carotid artery (ICA) on the left side of his brain is completely collapsed. The ICA on the right side is about 90% collapsed.

The treatment we have been using for this in the past (mostly blood thinners) have become ineffective. He started experiencing something called a transient ischemic attack (TIA) which are mini-strokes (a stroke with no damage, just a period of loss of oxygen to a region of the brain)

Ken's TIAs were about two to three times per week, and were always the same: numbness in his right side (leg, foot, arm, hand and head) and blury vision, and an inability to form words.

Ken's neurologist had been trying to treat this with pills for a while. Then this summer, the TIAs began happening daily, and then several times per day.

Ken was no longer able to drive a car or go to work. His neurologist gave us test after test, and we were getting nowhere.

We finally had a procedure called a cerebral angiogram. They would inject a dye into the artery of the brain, and photograph is with MRI images as the dye moved through the brain. The radiologist said surgery was not only the only option, but that it needed to be done months ago.

There were two options for surgery:

• 1. Direct Bypass - They take an artery from the scalp, pass it through the skull and sew it into the middle cerebral artery of the brain. Results and benefits should be immediate (i.e. all symptoms will go away)
• 2. Indirect Bypass - If they can't do the direct bypass, then they will do this procedure where they take the artery from the scalp, pass it through the skull and graft it onto the surface of the brain. There will be no improvement of his symptoms for at least 3 weeks, and will take 4 months for the symptoms to go away completely.

We selected the direct bypass, for obvious reasons.

The surgery was scheduled for October 5th. After the surgery, the surgeon let us know he was not able to do a direct bypass because the middle cerebral artery was too large, and "tapping" into it would not bring any more blood to the area. So the indirect method was done. We were told to continue to see Ken's symptoms (numbness, speech problems, TIAs) for two to three weeks.

We were discharged on October 8th.

Ken's speech got progressively worse, and on Sunday October 11th, I called the hospital, and they said to bring him into the ER and they would meet us there. He had had a 2nd stroke and was re-admitted that afternoon.

Today's Advice

Before you judge a man, walk a mile in his shoes. After that, who cares? ...He's a mile away and you've got his shoes.

New Ride!!!

iPhone

I broke down and got the iPhone 3GS today . . .