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Well, I simply don't have any free time at all anymore. I am up at 7am and don't stop until I go to bed around 10. I am physically exhausted. In the past three days, I have collapsed in tears twice. I don't think I have EVER felt this alone.

Ken's parents are killing me, and possibly him too. I got a call from his father this morning saying he had a bone to pick with me. He said he didn't want his wife cleaning up dog shit from my back yard anymore. She comes over every few days and cleans up the dog "leavings" from our backyard, and I BEG her not to. I tell her to just leave it there, and not to worry about it, but she insists on cleaning it up. Then apparently she goes home and tells Bill that she "has" to do it.

Ken has been out of rehab for three weeks now, and I have not been able to get a speech therapist or an occupational therapist to come by the house. I have gone through two agencies now, and have had to fire both of them because they aren't getting therapists to visit Ken. I think I spend almost 4 hours on the phone yesterday. My cell phone battery died, and I had to go to the car and use it so I could charge it. Helen says I am not trying hard enough. I'm not getting any work done at all. And I am so tired, all the time. I want to be selfish. I want just one god damn thing to be about me. I hate me right now.

Saturday, December 5th, 9:51pm

Hi all! Sorry for the lack up updates!

We are getting settled into the house nicely.

And Ken is doing amazingly well! He is walking now, and hasn't used the wheelchair in almost three days now. We had a wonderfuly busy day today. We went to hair cuttery and got hour hair did, then we went to Target and got a gift for a "Toys for Tots" party that our friend Steve and Lisa have each year, and then we went to their house for the party! We didn't stay long, only about 5 or 10 minutes, and it was so nice to see them again. Then we went back to Target for some Christmas cookies and came home and enjoyed them in front of the TV.

In other news, it snowed today. And then snowed some more, and then snowed and snowed and snowed. There is quite a bit on the ground now, and it looks great.

Work is going well. Ken has an in-home aid that stays with him during the day while I am work, and she is really helping out a lot. It is Ken's hard work, and her assistance that has him up and walking as much as he is now.

In the house, I have replaced the faucets in two of the bathrooms, fixed two of the toilets, replaced the kitchen faucet, replaced two of the light fixtures in the hall, and the light fixture in the front foyer and the front porch light, too. I have a bit more to do, but I'm almost done!

Thanks for the well wishes and thoughts!

Wednesday, December 2nd, 9:30am

Well, the old house is finally on the market!

http://mrislistings.mris.com/Matrix/Public/Portal.aspx?ID=64101425-874312624-56

The pictures are wonderful! This should sell quickly!

http://mrislistings.mris.com/Matrix/Public/PhotoPopup.aspx?L=1&TID=1&key=90139563513&mtid=1&n=23&View=G&i=0

Tuesday, November 24th, 9:37pm

Okay, I have a few moments so lets see if we can get all caught up.

Ken was discharged on Saturday.

We got to the house, and I asked Bill to run to the pharmacy to fill Ken's 18 perscriptions filled. They only had 38 of the 75 dilaudid pills, so we had to take those, and then come back for the rest this afternoon.

The movers got to the house on Saturday morning, and moved the sofas, end tables, and some other small pieces to the house. Then they returned on Sunday to move the rest of the house, and it took THIRTEEN HOURS!!!!!!! The movers/packers hated me so bad when they were finally finished. It will take forever to get unpacked.

So, since then, I have been unpacking, making doctor's appointments, cleaning, running errands, and missing baths.

Things are going well. Ken is feeling well and is getting better each day. As of this writing, he is able to walk around the house with supervision, but no assistance. He has a lot more movement in the arm, and the speech gets better each day.

In-home physical, occupational and speech therapy begin next week. Also, his sitter will begin next week (someone to be with him so he isn't alone in the house) and I will return to work on Monday, too. Things will slowly begin to get back to normal.

All is well.

Monday, November 23nd, 2:54pm

We've been without internet until just now. We are in the new place with 6,243 boxes. Getting settled. More news soon . . .

Thursday, November 19th, 11:12pm

Things have been going smoothly.

Ken had a fall today - not major. He pressed the nurse call switch to ask for help to get to the bathroom. After some time, he couldn't wait any longer, and walked there himself. He got in and did what he needed to do, but slipped and fell on the floor when trying to get off the toilet. He wasn't hurt at all, but the staff really gave him a hard time for going by himself without ever once acknowledging that no one came to help him.

I can't wait until he is out of that horrible prison.

House closing is tomorrow. I'm not too terribly far behind. I need to disassemble the observatory dome tomorrow at the very least. I have training again with Ken from 9am to 11am tomorrow morning, and should be able to get back here and do that before heading over to the new house for the final inspection, and then the signing and closing. Really not sure how we're going to work with the dogs on the white carpet. I think we may have to pull some of it up and put down a hardwood surface or something.

We practiced teaching me how do transfers today. I didn't really do poorly, but I didn't do well either. We're going to try again tomorrow. I hope I can improve.

Tuesday, November 17th, 10:13pm

The house inspection went very well. I think the biggest issue was possible water pooling under the water heater from the vent line from the ac/furnace. No biggie.

Visited Ken this evening and was able to determine that he has had a level 10 headache for about 3 days now. The percocet has not been working. Sometimes, Ken forgets to say 'not' or 'don't' or "didn't" when he speaks, so messages can be misunderstood. The staff thought he was saying, "The percocet is working" but he meant to be saying, "The percocet is NOT working".

They have put him on Dilaudid which I think is like morphine in pill form. I'm a bit scared of this, but really want his pain to go away.

In other news, I am super stressed. Seriously, there really are not enough hours to get things done.

I HAVE to have internet at the house this weekend so that I can get caught up on work, and COX can come out on Saturday the 21st, but they want $129.99 to reconnect the service. Verizon FiOS will give me free installation, but can't get there until the 27th.

OH! And Virginia Dominion Power says that the circuit breakers have to be turned off on Friday morning so they can get a final reading for the sellers before they turn my service on. We have the pre-assessment whatever walk-through on Friday at 2:30pm. I sure hope we have power!

I haven't even started on Gas and Water.

Ken is getting out on Saturday at 1pm. So from Friday at 6:30pm when I get the keys to Saturday at 1pm when I have to pick up Ken, I have to do the following:

Friday night, I plan to take the dogs and all their stuff (food, bowls, towels, leashes, etc) and the cat and all her crap over to the house, and spend the night there with an overnight bag.

Saturday morning, I have to be back at Farmington Drive to meet the movers at 8am so they can move the bed, sofa, night table, and a few other items so that when Ken gets there, he can sleep or watch TV or whatever.

Then I have to go to Mount Vernon to get Ken at 1pm.

Then on Sunday morning, I have to meet the movers at Farmington Drive again to move the rest of the house over to the new house. I'll have to have someone sit with Ken because he can't be left alone.

OH, and almost NOTHING is packed.

OH, and I have to find time to take the POD apart so it can be moved.

Okay, I'm gonna have to ask for help. I just don't know what to tell the help to do.

Some more house pictures

Monday, November 16th, 11:38pm

Did I post tonight . . . what time is it . . . hell, what day is it . . .

Starting to get pulled a bit tight. A lot going on, and there is plenty of time to get it all done if everything is coordinated perfectly. One hick-up and things will begin to fall apart. The thing is, I need two of me . . . anybody know how to split into two??

I can start bitching about small stuff like this now, because Ken is really doing quite well. Today, the occupational therapist told me that Ken is able to get out of the bed, walk to the bathroom, bathe, brush teeth, and potty with only a very minimal assist!!!!!!! This is such great news! Yodie can't even do that!!

The right arm still has little to no movement, but they tell us to be patient.

The house inspection is tomorrow. Then the closing is on Friday. Then Friday night, I have to move over the bed and some other furniture. Then the movers show up at 8am on Saturday, and Ken is released at noon-ish, and I need to have someone take over watching the movers to go and get him, and then drop him off at the house, then go BACK to Farmington Drive to get the dogs, and find someone to watch Ken while I do that.

This is like that puzzle from Jr. High . . . the one where you have to get a fox, a duck and a baked ham across the river in a boat that can only carry you and one other thing. The fox can't be left alone with the duck, the duck can't be left alone with the ham blah blah blah.

I'll find a way . . .

Sunday, November 15th, 8:37pm

Let's see . . . taking a small break from packing.

Went to see Ken this morning and he is really doing well. I have started to notice that the staff has become VERY attentive to him. I am guessing this is because of the stink that I made the other day, and I hope it has not affected him negatively, but it really seems like he is being well taken care of.

The severe hard-of-hearing roommate has been moved to another room. Ken has the place to himself, and image it will stay that way for the rest of this week until he is released on Saturday morning.

Ken is really becoming very independent. He can wheel himself around with his left hand and using his left foot in the wheelchair, and it works quite well. We have gone from him brushing his teeth while laying in bed, to him getting up, getting in the wheelchair, wheeling into the bathroom, and brushing his teeth with zero assistance. (I used to put the toothpaste on the brush, and hold the spit tray for him, but no more!)

Let's see . . . what else. I have to get the emission done on the E350 tomorrow, and review the quotes from the movers. Then I need to have someone supervise the removal of the staging furniture from the new place to ensure they don't trash the place.

I get the feeling this week is gonna FLY by!

They accepted our offer!! Assuming closing goes well, this is our new house! Click on any of them for a larger view!

New House Possible

Making an offer on this house tonight . . .

Thursday, November 12th, 10:42pm

Well, tonight was fight night. A lot of tempers came to a head, and it was not pretty.

I'll start at the beginning ...

When I arrived to visit with Ken this evening, he said he was hot, and that his blood pressure was very high, and that he wanted to stop taking the blood pressure medicine. He was very upset and was raising his voice.

The nurse went out to call the Doctor. When she got off the phone, she said, "Dr. Gxxxxxx said, he is no longer on the floor, and is out for the night". I asked her what that meant, and she shrugged.

I started walking back to Ken's room, and did not know what to do. I dialed Bill's number (Ken's Father), but wasn't sure what to say. When he answered I started relaying what had happened, when all of a sudden, I saw Dr. Gxxxxxx walk past the doorway. I walked outside, and confronted him, and began a tyrant of pent up feeling and emotions that I am going to tell you now, was not a pretty picture. (You may recall, dear reader, that we were not fond of this doctor from the get go. Now that I think about it, we seem to have issue with a lot of doctors . . . I'll have to analyze this later when I care)

So, then Ken starts screaming my name. I run to the room, and he wants to know where I have been. I tell him that I have been talking to Dr. Gxxxxx, and at that time, that doctor walks in too.

Well, I'll keep this somewhat short, but Ken went (to use a phrase of my Father's) Ape-Shit. He talked about how he felt ignored by the doctor, about all the issues that have been happening (missed medicine, missed meals, no sleep). It was a difficult discussion to hear, not to mention be a part of.

In the end (an hour later) everyone felt that they had gotten something off of their chest. Dr. Gxxxxxx genuinely apologized to Ken and said he would work on his level of care. He left, and Ken and I talked for a bit. He felt better. I called Ken's Dad back on the phone, and explained what had gone on.

So, I went outside and apologized to Dr. Gxxxxx for speaking to him that way in front of his team (and for saying something about the employment of his mother where money changed hands in a back alley).

As I re-read this, I see that I may be painting Ken's behavior as complaining or unreasonable. Please understand, that Ken has been through so very much, and when you can't move or speak and have NO control over an aspect of your life, you are like a caged animal. I'm surprised he lasted this long without speaking out.

It was a difficult evening, but he was able to communicate a lot that he had on his mind (which is hard to do when your vocabulary has been compromised) and I am proud of the way he handled himself, and proud to be a part of his life.

The E350

Oh, and here is the car we got in exchange for the SLK.

...to Amy

HAPPY BIRTHDAY!!!!! :)

Thursday, November 12th, 12:55pm

I'm back at work, and this is the first moment I've had to give an update.

Ken called this morning around 6:30am saying that he asked for 2 Percocet and only got one. I called the nurses station, and they were able to bring him another one.

Then he called back around 7:00am, saying that the pull-cord that activates the light over his bed has broken, and he can not turn off his light. I contacted the nurses station, and they said they knew it was broken, and have called an electritian to come and fix it. I asked them if they could just pull on the chain that hangs about 2" on the bottom of the fixture (the pull-cord was tied to this chain) and go ahead and turn his light out. They said, "Oh, yea, I guess we could do that. I'll go do that now."

Then he called again around 7:30am and said he was to tired to do his therapy today, and he wanted to have them canceled, and wanted to know why this keeps happening to him. He couldn't sleep the night before because his roomate had the TV turned ALL THE WAY UP. He called the nurse, then nurse turned it down, and the roomate turned it right back up when she left. So he didn't get any rest that night either. So, needless to say, he was quite distraught (sp?).

I contacted our Case Manager this afternoon, Tracy Ward, and explained those situations to her, and all of the other ones that have happened to us. (I had been speaking with the Charge Nurse, but I guess that was going no where). I told her that Ken has become afraid for his well-being there. He can't communicate with the staff, and his needs are being overlooked or ignored. She appologized, and told me that she would call the Director immediatly, discuss this with her, and that the two of them would visit with Ken right after that to help re-assure him of his safety and apologize for the errors that have been made.

Goodness!

Also, it turns out that Ken would rather have a professional watch him at home during the day while I am at work instead of Bill and Helen since he will require someone with good strength to help him move and such. Cigna says that they will not cover it since it does not require a specialized skill, so this one is going to have to come out of pocket. Tracy gave me a list of companies that offer these services (Nuture Care and Home Instead) and I will contact one of them to see if they can assist us and how much it will cost.

Wednesday, November 11th, 9:07pm

Geesh, there are slow days and then there are packed days. Today was kinda packed.

I was going to go and look at houses today with Chris, but had some other pressing issues, and it was raining pretty hard, so I pushed that back to this Friday.

I made it out to the car dealer to sell the SLK and traded it in for a 2007 E350. Very nice car in great shape, and will be a much better solution for us than the SLK.

Ken's folks are still on-board to buy the Camry, so we can get rid of that.

Visited with Ken this afternoon, and we had the discussion with Bill and Helen that Ken would like to have a professional nurse care for him once he is discharged as he believes it will be too much for them to handle. I think they took it pretty well.

I will be going back to work tomorrow, off to bedie-bye!

Tuesday, November 10th, 8:22pm

Today was the family meeting. That is where the therapists and the doctor and everyone meet to talk about Ken and his progress. He is doing very well and they expect him to be released next Friday.

Yea, next Friday. The 20th. OMG!

Well, I am not going to have a new house by then.

We talked about where he wanted to go and after several hours I was able to determine that he doesn't mind coming back to this house (I thought he was afraid of the stairs and didn't want to come back here.)

It turns out, he doesn't want to be supervised by his parents, Bill and Helen. We had originally decided that Bill and Helen would take turns watching him during the day while I was at work, and I would be there for the weekends.

He said he doesn't feel that they will be able to help him. He is 200 lbs and his parents don't weigh that much combined.

I've got to find a way to let them know that he would rather have a nurse come and be with him during the week, and have them come and visit.

I also think it has a lot to do with the embarrassment of having his parents have to dress him, and help him in the toilet and he just doesn't want that.

He is a little nervous about being sent home. He doesn't feel he is ready. He needs to remember that they are sending him home because 24/7 hospital care is no longer required . . . not because he is 100% fixed. He will need help dressing, walking, showering, eating and much more. But it can all be done safely at home outside of a hospital.

In other news, the BMW 750Li was a joke for a friend that reads the blog. It had a few folks concerned, so don't worry, it was just a joke. Bill and Helen may still buy the Camry, and we are looking for a sedan that is a bit cheaper than the Mercedes.

More if I think of it . . .

Monday, November 9th, 6:54pm

Today was a pretty busy day.

Started the day by touring houses with our realtor, Chris Upham. We went to see the first house that was $449,000 and I was amazed at how crappy it was! Cracks in the tub, one of the rooms smelled like mildew, kitchen cabinets were awful. Needless to say, that one is out.

The other ones I wanted to see were kind of disappointing. The first one was already under contract, and the other one was not showing that day because the tenants were sick.

Oh well, we'll look at more this week.

I got the power of attorney forms signed by Ken and faxed over to USAA (our bank) so I can get going on selling the cars. We have decided to sell both cars (Mercedes and the Camry) and get something else. I think I have decided on the BMW 750Li. It is nice an big for Ken to easily get in and out of, and I really like how it looks.

I didn't visit with Ken very long today. I did stay with him for about 15 minutes of his speech therapy, and it was very interesting so watch. Then he said he wanted to go to sleep and he would see me tomorrow.

So, I am going to pay some bills, and mabie watch some TV.

Sunday, November 8th, 8:33pm

Well, let's see. As Ken progresses, I think these updates will become a little shorter.

Ken is doing well. I was able to see him on Saturday evening, and again today and he is really doing well.

On Saturday, I had a trash party, and it went great. The dumpster is not full, but has a lot of crap in it. I can't believe how many people showed up. And I can't believe that I FORGOT TO ORDER PIZZA!!!!!!!!!!! I gave everyone beer, but there was only chips and nibbles for snacks!!! No one seemed to mind, and really didn't even remember until later the next day. I was really quite surprised by the turn out. And found myself quite touched that so many people took time to drive all the way out here, and help me do some crappy chore. Between that and having Mom and Dad here, it really was very touching. It has been rather lonely in the house for some time, and I really needed the company and the friendship.

On Sunday, Ken's folks, his brother and sister-in-law (Chris and Gwyneth) and my folks and me went out for brunch together, and then to visit Ken. This was such a nice day!! I really do miss seeing Chris and Gwyneth, and it was so nice for us to head over together and visit with Ken. And that was a very nice visit. Ken had not laughed and enjoyed himself that much in weeks. Honestly, weeks. This was so good for him.

House hunting is going okay. The house that I liked, and that Ken liked and was visited by Bill and Helen has now gone under contract by someone else. Poo! Well, something else will come up. I'm heading out tomorrow with our good friend and Realtor, Chris Upham (http://www.chrisupham.com) will head out to Fairfax VA to take a look at some properties.

I've got to get the Power of Attorney documents notarized. Then I need to sell the Mercedes. Then I need to pay some bills, and focus on trading the Camry in for something else. Ken doesn't want our only car to be the Camry: I don't really know why.

Updates should be more frequent now.

Friday, November 6th, 10:44pm

Mom, Dad and I went over to see Ken around 6pm this evening. It started out very good. We had a nice conversation, and we looked at pictures and cards the kids had made, and really enjoyed ourselves.

When we got back to his room, he started getting upset and impatient. He thought his medicine was coming too late. He asked for a supository, and didn't understand why it was taking so long to get there. When we requested it, I think they thought it was to be with his evening medicine which usually is at 9pm.

A lot of frustration from the past months started to come to the surface. He lost his temper a bit with his nurse (who, I must say was being a total "See You Next Tuesday") and was able to vent off some steam.

The thing is . . . they forget some of his medicine (like Keppra) unless I bring it up. They forget to use the numbing cream (lytocaine, I think) when putting in the catheter. He waits 30 to 45 minutes for a bed-pan, and when he is finished, he waits an additional 30 minutes or so. One day, they forget to bring him breakfast. He is supposed to wear the splint on his right hand from 9am to 5pm. When I get there between 6:30 and 7pm, it is still on.

If it were one thing, I could understand, but this seems to be one thing after another. And I picked the place. I hate leaving him when he is upset. He is alone and he is scared. I stayed as long as I could . . . till someone came with the bedpan.

Mom and Dad went to the lobby to wait for me at around 8pm or so. They waited down there for 2 hours for me to get Ken to a calm place. Bless them for that! :)

He gets so scared sometimes. He is being so brave, really. I don't know if I would be able to go through this with the grace that he is.

In other news, the trash party is tomorrow. Mom and Dad and I got a lot done today: the whole 2nd floor is done, so that is good. Just the basement left, so that should go quickly. I need to ensure Ken gets his laxative much earlier tomorrow, so I'll have to break up the party by 5pm or so. Mom and Dad have been such a strong support for me by driving all this way. I didn't realize how much I needed someone here with me until they showed up.

We are going to begin the sale of this house immediately. And I will begin the search for a new place on Monday. Ideally, I would like to have Ken discharged into the new house (around the first week of December or so). I gotta sell the Mercedes this week. Going to see if Meredith can help me out with that one.

His speech is getting better. Dad seems to understand EVERYTHING he says! We'll have to keep him here to translate for a few more weeks! :)

More tomorrow. Thanks readers.

Thursday, November 5th, 10:18pm

We had a great visit this evening. Ken had a good day in with therapy, and was actually OPTOMISTIC for the first time that I can remember.

We also talked about the house and cars. We have decided that the sooner we sell this house and get into another in Fairfax the better. I wonder how fast this house can sell. I've picked out a few to look at in Fairfax already.

And we are going to have to go to one car. I've mentioned this before, but the closer I get to making it happen the more I hesitate.

Lots to do. Mom and Dad will be here tomorrow, and then the trash party is Saturday. The more I can get rid of, the less I will have to move.

Why can't I sleep?

Honestly . . .

Wednesday, November 4th, 10:48pm

A very busy, long day.

Ken seems to be doing about the same. He seems to be under the impression that when the re-vascularization is finished from the surgery he had, that all of this will go away. I don't think he fully realizes what has happened. I don't think he knows that the damage is permanent.

His parents are staying between 4 and 6 hours each day, and I fear Ken is not doing any of the exercises he is supposed to be doing. He has no time with someone always sitting in his room, or sitting in with him during therapy. This needs to be something that Ken goes through on his own. He needs to learn to do things for himself. If he is cold, he needs to learn how to pull up the blanket. Mommy isn't always going to be there.

I think 7 days have gone by now and he is exactly the same as he was when he checked in. He has learned a few more words, and he can stand up from the wheelchair, but not much else.

I may have to go back onto family medical leave to ensure he is left alone during the day to exercise. I don't know what else to do.

Tuesday, November 3rd, 6:00pm

Got a call from Bill and Helen and Ken had a very good day today. They said they were able to take him in the wheelchair into the day room again and have a very nice lunch together. Later, when Ken was having physical therapy, the therapist invited them in for the session and they got to see the progress that Ken is making.

His Dad had an interesting comment. He said, "You know when you see someone every day that you don't always see a change like you would if you haven't seen them in a long time? Well, we are seeing a little change in Ken every day, even though we see him every day". I think that is really GREAT news!

He's not running a marathon, but his progress is steady, and I really think he is comforted by the support he gets from those that love him.

I'll visit him this evening and help him brush his teeth and get him ready for a great tomorrow.

House Ideas

Here is the sort of thing I think we are looking for.

Monday, November 2nd, 9:40pm

Visited Ken this evening. He was in a good mood, and had a good day. He was a little tired again, but otherwise feeling fine. We talked a little. I told him about the Trash Party this weekend, and he is fine with it. We talked about selling the house, where we would live when we moved. We talked about a house or a condo. We talked about the cars again, and he thinks we should sell the Mercedes and the Camry, and trade them both in on a new car. I have no idea why he would want to do this. But he agrees with me that he may not be driving for at least 6 months, and that's a lot of money we could be saving if we got rid of the Mercedes.

Ken says he can't move his right leg anymore. He says he could yesterday, but can't today. I asked him if he is telling people, but I'm not sure they understand.

Ken pressed his call button for a pain pill, and the woman came over the speaker and asked what he needed, and Ken said, clear as a bell, "Pill please" and she came back with, "Umm, what do you want?" Well, I kinda lost it. The station is all of 8 feet from Ken's door, and I stuck my head out and shouted, "He can't speak! Why don't you know that yet?" Yea, real mature, I know. I apologized to her a little later, and she said she understood and forgave me. I hate it when I do that.

The speech therapist apparently has asked that someone sit in with Ken during his speech sessions, so Helen volunteered and will be with him from now on for those. I'm not sure if the therapist needed help translating what Ken was saying or what. I know how he speaks a lot better, but not there during the day. Kinda sucks.

I've gotten a lot of responses for the Trash Party on Saturday, an I'm really looking forward to it. It is too quiet here, and I am starting to really feel alone, and probably a little sorry for myself. I'm missing everything. By the time I see Ken in the evenings, he has already experienced too much to share, and he is tired. I feel like we're drifting apart and he is forgetting me. **sigh** I guess it's silly, but it crosses my mind every now and again and I hate it.

Monday, November 2nd, 1:42pm

Just got off the phone with the case manager at Mount Vernon. She wants to set up a meeting for family members to meet with physical therapy, speech therapy, occupational therapy and the doctors so we can all sit in the same room and assess and discuss Ken's progress. I like this idea. She says we will discuss things like how he is doing in each of the therapies, when his projected discharge date is, what type of home care he will require and things like that.

I asked her, "I know it's early, but what do you forsee his discharge date to possibly be?"

She said right now they are thinking 4 weeks.

Ouch! I wasn't ready to hear that. I was initally told 12 to 18 days.

This meeting has been scheduled for November 10th at 2pm, and I'm really looking forward to that. I think the 4 weeks thing is just an initial estimate, but we'll see.

Getting back to things

First day back at the office in a while. Nice to have something to distract me from worry, but it still creeps in once in a while. It should go well. I'm getting all caught up, and will see Ken this evening.

Looking back . . .

I was looking at older posts and just rewatched the video from this post.

http://blog.toddwess.com/2009/05/are-you-going-to-finish-strong.html

I'm actually at a loss for words after watching this again.

I mean it may sound negative, but really . . . . things could always be much worse. We're okay. I'm happy for my friends and for my family and I'm happy with how Ken is doing. Gonna try and thwart some of the negativity I create (usually from nothing)

Sigh . . .

Sunday, November 1st, 9:43pm

Just got back from a nice visit with Ken this evening.

I read him some more cards that came in, and the he brushed his teeth, and I flossed them.

It's nice . . . the visits are becoming much more social. In the past, visits were centered on getting this medicine, or talking to this person, or making this happen, or asking him where it hurt and how much and for how long. Now, there is more relaxed time and it is nice.

I told him to expect some drawings/art from some famous artists for his walls. He has no idea what I'm talking about.

I'm going to work tomorrow. It is time. Mom and Dad will be here this weekend, and I'm having a "Trash Party" on Saturday. I have a TON of crap that I need to throw out, before I even THINK about selling the house but can't get motivated, so I had an idea. I would rent one of those 9ft x 8ft x 3ft dumpsters, have it delivered to my driveway, and invite over a bunch of friends to help me carry crap out of the house and throw it in the dumpster. I'd provide refreshments and food, and we'd just all kinda spend an afternoon helping me throw stuff out of the basement. Plus, Mom and Dad can meet my friends, and see Meredith again!

Then on Sunday, we will have brunch with Bill and Helen and Gwyneth and Chris and then all go over and see Ken. We were going to do this on Saturday, but Sunday works better because he has the entire day free of therapy appointments.

I see Ken again tomorrow evening. I may start adding random posts in again that aren't related to Ken's progress, but the ones that are will always start with the day, date and time in the subject line.

Great week, everyone!
Todd

Sunday, November 1st, 2:05pm

Gosh is it November already?

Today was a VERY good day.

When I got there at 10am this morning, Ken was in a great deal of discomfort. He was having a problem with constipation (I know, I know, too much information, but I use this blog as a journal of events, so nothing gets left out)

It took about an hour and a half, but he was finally better. We have recommended a suppository each evening for a while.

After that, he said he wanted to change into clothes. Occupational therapy usually does this, but on Sunday there are no therapies. So I brought him his clothes, and we got him changed out of the gown.

Then he said he wanted to get in the wheelchair. This was a first. The nurse came over, and we got him in the wheelchair. This is the best I have seen him since before the surgery on October 5th! We wheeled him over to the 'Day Room' (a room with tables, chairs, a TV and stuff for visiting). We brought in his lunch, and his parents, he and I all sat and chatted a bit while Ken ate.

Then, he wanted to go back to his room and lie down. I wheeled him in there, and locked the chair wheels. Then he got up all by himself, pivoted, and got into bed. By himself. I damn-near cried.

Then he said he was going to rest, so we headed out. It was a really nice visit. I really think the worst is behind us.

I start back to work tomorrow, so I really needed a good day to help me not worry while at the office. Everything is going to be okay!

Saturday, October 31st, 4:45pm

Sorry for the gap in posts, it has been a busy few days.

For starters, Ken is doing well, but a lot has happened.

Yesterday, after during occupational therapy, they have him sit up in bed, change out of his hospital gown, wash himself with some washing cloths, and put on his clothes. These seem like simple tasks, I know, but with only one arm (and not your dominant one) it can be difficult. The move into a wheelchair, and do some more exercises. Then the therapist leaves him in the wheelchair for the next therapist the comes by.

That was from 8am to 9am. Scheduled after that was speech therapy from 9 to 10 and then physical therapy from 10 to 11. Kind of a lot all at once, but I told him at least we were getting it all out of the way in the morning, and would have the rest of the day to rest. He didn't sleep well at all the previous night. (First night in the new hospital, and the cough is really keeping him up)

So we are waiting for speech therapy to show up. And waiting, and waiting. 9:30 still no speech therapy. I start to ask around, but no one knows. Then at 9:45, they tell us that there was an emergency, and they were going to move Ken's speech therapy to 11am. Ken is exhausted from sitting the wheelchair for so long (he has been lying down for over three weeks now and sitting up was taking some energy). He said he wanted to move into the bed. I went and got a nurse, but they said that his physical therapy was starting at 10am (15 minutes) and they were going to want him in the chair anyway, so could we just wait it out. Ken says okay.

10 o'clock comes . . . 10:10 . . . . 10:15 . . . no physical therapy. Ken says, that's it, I'm getting in the bed. I call for the nurse again, and this time they get him into bed. He has a pounding headache, and is very tired. Physical therapy shows up at 10:30 and says they were reviewing his chart (which I can believe may have taken that long . . . his chart is huge). They start working with his legs and arms with range of motion and stuff like that. Then, they move him to the wheelchair and say they are going to go down the hall to practice standing up. About half way down the hall, Ken says he is very dizzy, and they take his blood pressure.

107/78

Because of Ken's condition, the doctors have him on SEVERAL medications to keep his systolic (top number) between 130 and 160 at all times. I have NEVER seen it lower than 138. The doctors are notified, and Ken is returned to his room.

Once there, we are visited by an ear, nose and throat doctor to address Ken's cough. FINALLY, someone sent for a specialist!! This doctor was very good, and said that he needed to put an endoscope down Ken's nose and into his throat to see the vocal cords and what-not. He sprayed some topical numbing solution in his nose, and went to work. I had to leave the room. The doctor says that he believes the cough is due to the large amount of congestion that Ken has, and he is prescribing a steroid nose spray to help with that and an Advair inhaler to help with the symptoms. Finally some good news. We all feel relaxed.

The nurse has come back in after talking to the doctor about his blood pressure, and the doctor has ordered a 3% saline IV to help boost his blood pressure. The nurse has never worked with the a port before. [Ken has a catheter going from the upper part of his left arm, through the skin, into a vein, and going all the way into his heart. It has a valve on the outside of the skin so that IV fluids can be easily administered without having to always put an IV in the arm each time. Kind of like a permenant IV line) So this nurse is struggling to get the port to open, and has to call for help. They get one of them open (he has 2) but the other one won't budge. They hook up the saline solution to the open port and turn on the machine that administers the fluid at the appropriate rate.

A few moments later, Ken grabs the left side of his face, and has a puzzled look. He says he just lost feeling on his left cheek (all other numbness has been on the right so far) Then he grabs his left temple and yelps in pain. We call a doctor immediately, and he orders another CT Scan. They believe he may be having another stroke. While we are waiting for transport to radiology, Ken begins to shiver. We get two more blankets. Still cold and shaking all over.

They take him down to radiology (good thing his rehab center is also a fully functional hospital - they have a CT Scanner and an MRI machine right on site)

The CT scan shows no new damage or strokes, and Ken already seems to be feeling better. The attribute this to the nerves from his surgery repairing themselves and sending false signals.

Ken was back in his room now, and was feeling a lot better.

I went home, and then returned that evening to follow up with him. He was still doing well, and was very tired.

Okay, so that was yesterday.

This morning, I got to the hospital around 10am, and Ken was already at occupational therapy. He got back around 11 and was in a pretty good mood, but was VERY tired again. Apparently, his roomate is a "travel-risk" meaning that although he can walk, he is not stable enough, and because he may hurt himself if he tries to get up, he has a "sitter" sit with him 24 hours a day. The problem is that Ken says they talked the entire night. Also, his roomate is practially deaf, so they were shouting at each other.

The nurse told me that since there was another patient two rooms over that also needed a "sitter" they would swap that patient and Ken so the two patients that need a "sitter" are in the same room. So at least that was good news.

His lunch was delivered, and I got him to eat some of the main dish, and then he said he wanted some of the salad. Instead of putting the food in his mouth, I started putting the food on the fork and then handing it to him. Then by the end, I was holding the salad bowl, and he was putting the food on the fork and eating by himself. This is a FIRST!!

Then he brushed his teeth by himself. He realy seemed much more on the ball today even though he was VERY tired.

After lunch he was resting a bit, and asked that his folks and me leave so he can get some rest. So we left today around 3pm or so. He seems really better today. I actually felt okay leaving him because the day had been going so well.

Now, I am at home, doing some laundry and getting ready for trick-or-treaters. I had not bought any candy yet, so I stopped by the CVS and got some candy and some sim ple decorations. It feels weird decorating the house by myself, but Kenny will be home soon.

Friday, October 30th, 8:30am

Ken is in better spirits today. Having occupational therapy now. Going very well.

Still being cath'ed for urine, but doing real good so far today!

Friday, October 30th, 1:17am

Can't sleep. I didn't post any more yesterday because I was tired . . . it was a pretty long day.

We got Ken all settled in rehab at Mount Vernon. We have gotten a little used to the intensive care unit . . . I bitched about it before, but compared to regular care . . . well, let's just say we miss the ICU.

This is going to be really hard for Ken. Already, on day one, they are telling him, "No, you need to brush your own teeth" (I know it sounds silly, but brushing his teeth takes quite a lot of coordination right now)

It pisses him off they are 'forcing' him to do things for himself, but this is the ONLY way he will reprogram the brain.

It is hard to see him suffer, and it is even harder to say 'No' when he asks for something he can do himself.

I can't imagine how Bill and Helen feel . . . this is their Son . . . they want to help him, but in this instance, helping him will just hold him back.

More tomorrow . . .

(thanks to all that read this . . . I would hate to think I was typing all this in vain)

Thursday, October 29th, 12:45pm

Well, we're getting discharged to Mount Vernon in a few hours. Ken didn't get a lot of sleep last night as there was a lot of comotion with his roomate. He is tired and a little grouchy, but understandable.

More once we are all settled.

Wednesday, October 28th, 8:30pm

Busy day. I was in Ken's room most of the day. Let's see.

General status - he is still doing well. Very little headache remains. He is currently on the following medications:
Lovenox
Backlafin
Nerotin
Keppra
Asprin
Requip
Plavix

No news on the cough. He still has it, and it is still bad. His doctor today said that if I can contact the doctor that prescribed the inhaler for him in the past, that he will write a prescription for it. Since we think he had the inhaler around 2003-05, I called his old doctors office from back then, but they have no record of ever having prescribing him an inhaler. That leaves Dr. Bernad. I sent him an email asking him about it, but have not heard back. Shocking, I know.

Today Ken had physical therapy (PT), occupational therapy (OT), and speech therapy (ST). OT was first, and they worked on getting in and out of a large chair. It was pretty difficult, but he managed. PT came next, and they were working on his range of motion exercises, and then had him stand up and sit down 5 times. It was really refreshing to see him standing up again! Then, ST was later in the day. I didn't sit in on that one, but it is his weakest subject. Lots of work to be done here.

And I guess I should have leaded with this . . . he is getting discharged tomorrow morning into rehab at Mount Vernon Hospital!! This is going to be difficult for him, but is a very big step. He is stable and ready to be transported. This is such a relief!

OH! And eating - He ate solid food twice today!!! His mother went and got some pasta from the cafeteria, and he ate about 1/2 of that (it was a large serving) and when dinner was delivered, it was spaghetti, and I got him to eat about 1/2 of that.

I've got his suitcase almost packed. Going to get a few more things in there (doing a load of socks now) and then we should be all set for tomorrow.

If all goes well, he should be home in 2 to 3 weeks!!!

Wednesday, October 28th, 12:00pm

Sitting in Ken's room. Been here about an hour or so now. No doctors have come by, but we have a new nurse that has to be broken in . . .

Tuesday, October 27th, 8:45pm

Well, we had a very nice visit. Ken is off all IVs and seems to be doing very well.

He had a lot of activity today. Physical therapy was here and did a lot of range of motion exercises and he was a little tired, but otherwise fine.

I'm going over tomorrow morning to see if I can catch one of the doctors . . . I seem to always be missing them.

So now we just ride it out until we can get into rehab, hopefully this weekend.

More details tomorrow. I'll have more time to elaborate tomorrow.

Tuesday, October 27th, 3:00pm

Just heard from Bill and Helen from their after noon visit.

Ken is doing well, which is good to hear.

They said that the doctor came by and they had a long meeting with him, and then a representative from Mount Vernon came by and they had a long talk with them.

No one called me. I am missing too much, and not getting enough information.

I'm going to have to start visiting in the afternoon as well as the evening just to get information. I originally split up the visiting hours because only two were allowed in at a time, but now, too much is slipping through the cracks.

From what I heard from Bill and Helen, Ken is off all IVs now, and assumning he does well the rest of this week, he can check into Mount Vernon on Saturday.

More this evening.

Monday, October 26th, 9:20pm

Had a good visit this evening. Very simple and quiet. I think he is really getting stable enough to be discharged to rehab very soon.

He is off the medicine to raise his blood pressure, and is doing very well. The cough is still an issue. Why has no doctor examined this to see what it is????

That's about it. I've been invited to a Halloween party this Friday. I think it will do me some good to get out a bit.

More tomorrow.

Monday, October 26th, 1:30pm

Just got an update from Bill and Helen. Ken is doing well. His pain is well managed.

Still has not eaten solid food again since a few nights ago, so Helen spoke to the kitchen about the food being delivered, and they sent up a nutritionist to speak with them. They brought up a menu of items, and asked Ken to select the items he thinks he could eat. He picked pastas, macaroni, orange juice, ensure and sorbet (sp?). I think I will stop by the store and get a 6-pack of Ensure, and ask the nurses to keep it in a fridge and bring him one if he wants one outside meal times.

n off all of the IV's and all the blood pressure medicines. If his blood pressure remains in a good region, he will most likely be released to Mount Vernon on Wednesday. That would be good! The doctors have gotten somewhat lazy about calling me with updates. I need to get in touch with his new neurologist and find out the deal-ee-o.

On my way out last night, they were delivering him a splint for his hand, but brought the wrong one, and Bill and Helen say that he did not have one this morning, so I am guessing they never brought up another one. Need to check on this this evening, too.

In other news, SRA has notified me that I have been approved for something called the Yates Fund. Employees donate some of their leave hours to a fund for other employees to use when they have a family medical issue, and are out of vacation and sick time. I have been approved for 60 hours that will offset the time I have taken off for Family Medical Leave (which is non-paid time off). This will work out nicely. I will be back to work this week, so not many hours will be spent with out pay. I must make a note that when this is over, and I have saved up some vacation time to be sure to donate hours back to this fund for others. What a great idea this is!

Sunday, October 25th, 9:00pm

Today, we were trying to figure out what was causing Ken's headaches. I asked the nurse if the doctor from last night made any notes in the chart about what they think is causing the headaches, and if this information was given to Ken. They didn't know (shocker) and called the neurosurgeon on-call. He says that he believes the the nerves are in the process of repairing themselves, and some may be sending brief, incorrect signals. They put him on a medicine to control seizures. Gwyneth, Ken said this is a medicine you have been on in the past. I forgot the name, but as soon as the doctor said the name, Ken was very excited and indicated that Gwyneth had taken it, and was very eager to try it.

The rest of the visit was good. We had a discussion about why all this had happened. Why everytime he goes home he has to come back. I get the feeling that he is not 100% comfortable with the doctors . . . not sure if it is Deshmukh or the new neurologist that is seeing him. But he seems to be indicating that they talk quickly, and then leave.

So, for those keeping tabs, he is on this new medicine 300mg 2x per day, Keppra 500mg 2x per day, Plavix 75mg 1x per day, Asprin 325mg 1x per day, Requip XL 10mg 2x per day, and one other that I can't remember.

His right hand is supposed to be in a splint to hold the fingers open, but nobody has brought one by. On my way out, it was being delivered, but they brought the wrong one. They brought one for the left hand.

It looks like he will not get out into rehab until later in the week. Going to try and get in touch with his doctors tomorrow to get some more information.

Sunday, October 25th, 4:00pm

Gosh, this has been a busy day!

The CT Scan from last night did not show anything new, so that is good.

Dr. Deshmukh came to see Ken this morning, and says that he is doing well.

We visited Ken today at 11am and he is still doing well. They have him on percoset for the pain that he is still having hon the side of his head, and giving him some cough medicine, too. No additional progress. They are trying to get him to keep the fingers on his right hand extended so they don't get atrophy, or something.

He is still eating, but not as much. I wish I understood these headaches.

Will have more this evening after the 6pm visit.

Update

Doing well more soon. Away from a pc

Saturday, October 24th, 11:30pm

Ya know, I have to stop and think . . . I have had shit for luck since day 1. Is this rubbing off on those that spend time with me? I mean, really. Is there such a thing as a jinx?

How is it that we are encountering this many people that are inept in their work? One after the other. Things are forgotten.

"Oh, we didn't allow Ken to have food or water today because we thought he was having a procedure, but that was yesterday."

"Oh, yea, that is quite a nasty cough. Let us know if it doesn't go away."

"His head is hurting? That seems odd . . . let us know if it doesn't get better."

I hate cliches . . . I HATE them, but friends, this is "getting old". Ken doesn't deserve this.

Saturday, October 24th, 9:50pm

Okay, they gave him some percoset for the pain and the Dr is here, and has ordered a CT Scan. She said she will let me know if it shows anything new, or if they have to move him back to ICU.

Ken was feeling much better after the pills. He had not had any pain medicine since early this morning.

His blood pressure is nice and high, so they do not think that a stroke is likely.

When I left, he was feeling much better, and the nurse he has this evening, is quite good.

I think he is in good hands. I'll be seeing him tomorrow morning, and will have more then.

Saturday, October 24th, 8:15pm

Still with Ken in his room. He has been complaining about searing pain at his right temple, that comes and goes in waves.

This seemed similar to what he was having when we were at home before the last stroke.

He is out of ICU now, and I think he may have been taken out too early.

The nurses keep saying, well if it happens again, let us know. It is happening about every 10 minutes or so, and I keep telling them.

I finally got the night nurse to make some calls, and she has talked to the neurologist on-call, and they are taking it one level up from that now.

This is exactly what happened the last time he was discharged. He got this searing pain on the side of his head that kept coming and going every 5 to 10 minutes, and when we went to the emergency room, they said he had a 3rd stroke. I fear this may be happening again.

I think they need to get him back on the high blood pressure medicine and move him back to Neuro ICU.

I told them I am not leaving until a doctor sees him. We'll see what happens.

Saturday, October 24th, 5:45pm

Ken has been moved out of ICU. He is in 353-2. Not sure how I feel about this.

Waiting in the hotel lobby for 6:00pm to roll around.

This HP Mini PC is pretty cool . . . goes anywhere.

Todd

Saturday, October 24th, 3:00pm

Hmmmm . . .

I heard from Hellen after their afternoon visit that Ken was complaining of intermittent headaches at his temples.

This is the same sort of headache he got right before the last two strokes.

I called the nurse, Robyn, and told her that the last two strokes he had were preceeded by headache at the temples. I asked her to please call Dr. Deshmukh. She said she would.

She called back about an hour later, and said that they were able to communicate with Ken a bit more, and determine that it was pain at the incision site from the surgery, and that they have given him some pain medicine and was feeling fine now.

So, now the nerves are back on hyper-alert. I'll post again after this evening's visit.

Todd

Friday, October 23rd, 8:15pm

Another good visit. When I got to his room, his dinner was there from earlier in the day with nothing eatten.

After small talk and some hellos, I took the cover off the plate. Vegetarian lasagna and green beans. Actually looked pretty good. I said, "Hey this looks pretty good. You wanna try a small bite?" He said yes, so I cut him a small taste and fed it to him.

He ate all of it!!! And all the green beans!!!

This was so good to see. FINALLY!!

Speech and motion are about the same. It looks like Monday morning transfer to Mount Vernon Hospital.

Thanks again for everyone's thoughts and prayers!

More tomorrow,
Todd

Friday, October 23rd, 1:30pm

I called the case worker and let her know that we had decided on Mount Vernon Hospital for rehab. So that is all taken care of.

Then I called Ken's nurse to see how he was doing. She said he was doing well, but did not sleep well through the night. They had switched him to an oral medicine for maintaining his blood pressure, and she thinks that may have something to do with it.

They are now looking at him being released probably on Monday. Not great news, but we'll take what we can get. I just wish he was more comfortable.

I've been cleaning the house today. We had a maid service that came once every two weeks, but I've canceled that for now. Gives me something to do, and I'm finding stuff I've been looking for for weeks.

More tonight,
Todd

Thursday, October 22nd, 9:12pm

Today has been a very busy day. I look back on things accomplished today, and I think they were days ago.

First things first . . . contacted Doctor bernad's office and told him we were not going to need him going forward. I contacted the new doctor we had selected and ensured that they knew that they would be taking over as primary neurologist for Ken both in the hospital and once released. They agreed. I asked them how I go about notifying doctor bernad, and they said to just call his office and let them know. (Damn! I was hoping they would offer to do that). I called his office and told the woman that answered the phone to take a message. I said that Ken Hauser had found a new neurologist to work with, and he would not need to visit him in the hospital any further. I was afraid he would call me later in the day to ask why or something, but I never heard from him. He may not check his messages until he makes his rounds, so he may not get . . . . .

HE JUST CALLED!!

Okay, just got off the phone with him. He did not get the message, and I had to talk to him about it on the phone. He said he understood, and was very gracious. He said that if we needed anything in the future to let him know, and asked to know how well Ken progressed. I was impressed by his tone, and a little disappointed in myself for thinking he would react badly. He has re-earned his capital-B, so back to Doctor Bernad.

Ken has made some nice progress. He can lift his right leg all the way up off the bed, and if you straighten out his right arm, he can bend it in about 90 degrees. This is all such good news!

We settled on a rehab facility today. I visited two of them, and brought back info for Ken to consider. We were each kind of on the fence about them . . . each seemed nice. Dr. Deshmukh arrived, and we asked him his opinion, and he said that he had no experience with Virginia Hospital, but everyone he has sent to Mount Vernon has been very pleased. Well, that kind of sinched it. I asked Ken if that made up his mind, and he agreed. Mount Vernon Hospital it is. He should be released from ICU in a few days, and will be in the inpatient rehab facility at Mount Vernon Hospital for the next two to three weeks.

I think it is okay to have hope again . . .

Wednesday, October 21st, 10:43pm

Dr bernad just called. I was in the potty. Perfect!

I told the nurse this evening that if Dr. bernad visits Ken after 10:30 that I wanted him to call me, and he did but I missed it.

He left a voice mail. He says he is examining Ken and he has stopped the medicine for his blood pressure.

Damn it! That was prescribed by Dr. Deshmukh, not him.

He also said he will be there for a while. Right.

I HATE THIS!! The hospital is locked, so I can't go there. I called neuro ICU and talked to Ken's nurse, and she said that he just left.

Well, no sleep tonight . . .

Wednesday, October 21st, 9:00pm

I got a call around 3pm today from a nurse saying that they were going put in a IVC Filter in Ken, and they just wanted to let me know.

I had no idea what she was talking about. I called Amy, and she let me know that it was a filter put in the inferior vena cava to keep any clots from the legs making it up into the heart. They said the doctor would call me to give me more details.

Then 6pm came around, and I went upstairs for the visit. I saw the nurse, and she said they decided to do the procedure tomorrow morning instead. Ken was asleep when I got in, but woke up in a few minutes. We had a nice visit. He seems content and was not in any pain.

He was asking when he would be coming home. I asked if he meant after this, and he said yes. I'm not sure. I told him that he would be going to another hospital for physical, occupational and speech therapy. He wanted to know why he couldn't do all that at home.

Tomorrow, I am taking a tour of Virginia Hospital and Mount Vernon Hospital. These are the two candidates that can provide Ken the service he needs, has available beds, and is covered by our insurance.

Good day.

More tomorrow.
Todd

Wednesday, October 21st, 1:10pm

I hate not being able to see Ken during the day. I had made arrangements with Ken's parents that they would visit during the day, and I would visit during the eveing to ensure we were not overstressing Ken. I'm going to see if they think it is okay to change that so I can visit for 5 to 10 minutes in the afternoon as well, and vice versa.

I have been on several phone calls with the case worker at iNova Fairfax and representatives from Virginia Hospital and Mount Vernon Hospital regarding Ken's rehab care.

Ken will be requiring acute rehab care, they tell me, and the hospital that takes him in has to come and see him first to determine that acute care is called for, and then make sure they have the room, and then make sure that Cigna (our insurance) will pay for it.

Lots of time on the phone today with several different people. Could not have done this as well if I had not taken family medical leave from work.

It looks like we will get to choose between Virginia Hospital in Arlington or Mount Vernon Hospital in Alexandria. I am setting up tours of each facility to get a better view of how they look.

I left a message for Dr. Cochran (the neurologist that we want to replace Dr. bernad) and I got a call back from one of the other neurologists in his practice. I told her that Dr. Cochran had been visiting Ken in Neuro ICU and that we liked him and want him to take over as primary care physician for Ken. We explained that Ken and Dr. bernad do not agree on the way his disease should be treated, and we are looking for another doctor that is more aligned with what we and our neurosurgeon believe. (Nice wording, huh?) She agreed with my logic, and said she would take a look at Ken herself today, and converse with Dr. Cochran, and one of them would get back to me this evening.

I'm off to get dog food, and put a bill in the mail. I have NO idea what stamps cost anymore. There are some on Ken's desk, but not sure how old they are, so I'm going into the post office to buy a stamp. Exciting, no?

More this evening,
Todd

Tuesday, October 20th, 9:00pm

Well, today was pretty uneventful, which can be a good thing.

Ken's parents visited Ken at 11am, and he was doing well. And I went to see him at 6pm and he was also doing fine. Pretty much the same.

I was finally able to get the grass cut, and I handled some insurance issues, and checked some of the rehab facilities to see if they were covered by our insurance.

So far, everyone I have spoken to (doctors, nurses and the case workers) say that there is no better rehab facility for stroke recovery than the Mount Vernon Hospital. This is also the facility that Ken's (hopefully) new neurologist recommends. The only thing is that it is a long drive from Bill and Hellen that live about 45 minutes away in Reston. I'm speaking with Ken's case worker tomorrow morning to get some more information.

Nice even-keel day.

More tomorrow,
Todd

Tuesday, October 20th, 12:30am

Well, I thought since Dr. bernad called last night around 12:30am, that he might call again at the same time . . .

Monday, October 19th, 11:00pm

Well, it was only a matter of time. Could this be any more vague???

I have only blocked out policy numbers, dates and his account number . . .

Where is the phone number to call???????

(click the image for a larger view)

Monday, October 19th, 9:45pm

Oh where to start. Well, first things first . . .

KEN LIFTED HIS RIGHT LEG TODAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I can not believe how excited I was to see this! The Doctor even went out into the hall to get Ken's nurse and have her come in and see.

Okay, but now, I must go back a bit.

I went to bed Sunday night around 10pm or so. The phone rang at 12:30am. It was Ken's Neurologist Dr. bernad (the one we don't really care for) and he wanted me to know that he was in Ken's room giving him an exam, and he seemed to be doing well. I can't believe he woke Ken up at 12:30 to do an exam, and then stayed in the room and use the room phone to call me. He didn't really tell me anything that I didn't already know (he is doing well, they are doing an MRI tomorrow yada yada yada), but then started to say things like, "Clearly you can now see that this surgery did nothing for him and was a mistake". **sigh** Ken's neurologist and his surgeon do not agree on the care Ken is recieving. Ken's father and I have discussed and agreed that he must be replaced. His negativity it not helping. I can give more details on this if anyone is interested.

I finally went back to sleep, and got up early to make it to work by 8am. Once there, I was pre-occupied with getting some bills paid that I needed to get out today and before I knew it, it was time to head over to the hospital for the visiting hours.

I got up to Ken's room, and he started trying to describe to me something that he needed. After about 30 minutes, I still didn't have it, so we sort of gave up. His parents showed up shortly after. Then his lunch was delivered, and we all sort of tried to get him to eat since it has been so long since he has had solid food . . . and I think it was too much. There was some yelling and some throwing of pudding.

I think we have been a bit selfish and have tried to spend as much time with Ken as we possibly could without realising that it might be too much for Ken.

We talked about keeping our visits shorter, and perhaps having the afternoon visits be with his parents, and the evening visits being with me. We are going to try that out tomorrow and see how it goes. While I think it is a good idea, I hate the idea of only seeing him once per day.

When I got back to work, I really started to realize that I was sort of not being fair to SRA (the company I work for). They have been so generous by allowing me to work from home as needed and then leaving mid-day to go to the hospital for visiting hours. But the thing is, I have not been able to keep my mind on work when I get back. I'm trying to do too much, and it isn't working out.

I leave the house at 7am to get to work by 8am. Then I leave work again at 10:30 to get to the hospital by 11. Then I leave the hospital at 1pm (or whenever they kick us out) and go back to work. Then I stay at work till around 5:30 and head back to the hospital for evening visiting hours. We leave Ken's room at around 8pm and then we talk in the hall and/or down in the lobby for about a half an hour. I usually don't get home until around 9:30 or so.

I am spending almost 3 and 1/2 hours in my car each day. And if Ken's rehab center is located that far out, I see NO change in that.

I wasn't giving my full effort to work, and decided to take unpaid leave under the Family Medical Leave Act (FMLA). This is where the employer will allow you to take up to 12 weeks to care for a family memeber, without pay, and you will keep all benefits, and will be guaranteed your job when you return.

I have NO intention of taking 12 weeks! I just need a few days (since I have already burned through my vacation and sick time) to help me get some rest and get organized a bit. Once Ken is in rehab, the schedule should be much easier.

I spoke to my direct manager, and our program manager (by boss' boss) and both were MORE than supportive. They told me that they understood what I'm going through, and my program manager even said, "Helping you get through this by granting family medical leave, is something that SRA can give to you to show our support for you and Ken." Wow, right?

But others seem to be worried. Why not take vacation they ask.

I mentioned to someone today that I had no vacation left, and they were puzzled. "How did you go through all your vacation time already?" Ken hasn't been able to work or drive a car since around June. I've been taking off from work for doctors appointments and MRI scans and the like on and off for months.

Shit, I'm re-reading this and it really seems dis-jointed, selfish and self-centered. Not the direction I wanted these posts to take . . . sorry. Today was just kind of a bad day. I thought I had found this great solution by taking some leave from work, but it seems to be worrying some people.

So, I'll wrap this up. Ken is making wonderful progress. He is in a wonderful unit at Fairfax Hospital. He has loving friends and family thinking and praying for him, and has been made aware of this.

It's all going to be okay.

Monday, October 19th, 4:30pm

Running a bit behind today. I have info to post, but am finishing up some paperwork here at the office to file for family medical leave, then I am off for the 6pm visit.

Ken is doing well . . . pretty much the same. More in a few hours.

T

Sunday, October 18, 9:10pm

This evening's visit went well. Much better than this afternoon.

Getting Ken to eat is quite difficult. Splitting an atom of hydrogen with nothing more than a plastic spoon and a tic-tac would be easier. Containing the subsequent thermonuclear reaction with nothing more than tin-foil and paper-clips would be a welcomed task. (too much?) Seriously, I hope they can get him to start eating tomorrow.

Ken's speech is MUCH better. He had two or three sounds that he used for everything and now he has a good vocabulary of more than 20 words at least.

I think Ken is really starting to understand the situation he is in. His patience is shorter, as is his temper (which is COMPLETELY understandable . . . I'm not complaining, just describing details). Visiting hours are two hours long, and I think taking the whole 2 hours, might just be too much. It is hard to leave early, but I think we might have to start keeping the visits a bit shorter. Not sure yet.

Night night for now. More tomorrow.

Sunday, October 18, 3:30pm

Got a call from Dr. Deshmukh this morning. He had checked in on Ken and said he was doing better. The twitching of his arm was gone, and his right leg and right arm were responding to stimulus.

We went over for a visit this morning at 11, and he looked better. His speech was also improving. He used to only make a few sounds, but now he seems to be almost forming some words.

Still not eating. Nurse said if he doesn't eat soon, they are going to have to put in a feeding tube.

He is really starting to get frustrated. I think he is beginning to fully grasp his situation. He is showing a lot of frustration and at some times anger. He was crying for the last 1/2 of the visit. I can't even begin to imagine what he is feeling inside.

It's becomming increasingly hard to keep a smile and positive disposition.

I'm going to try and get some sleep before this evening's visit.

More soon.

Friday, October 17th, 8:30pm

Had another visit this evening that went well. The visits are a bit bitter-sweet. I hate to see Ken in pain, but I love to see Ken. Can't have one with out the other for now. We're working on that.

The doctors read Ken's CT Scan from last night, and detected a tear in the carotid artery in the neck (before it forks into the external carotid artery and the internal carotid artery). A flap of tissue on the inside of the artery had come loose and was blocking the artery.

He said they were going to do another cerebral angiogram (like the one done in September by sending a small catheter up through the femeral artery in the groin to the carotid artery in the neck).

After doing this, they discovered that the CT Scan had been misread, and the angiogram showed that the carotid arteries are both fine. "Yea" for no damage to the carotid artery . . . "For Shame" for the dolt that misread the CT Scan.

Yesterday's stroke has left Ken completely paralized on the right side, and he cannot speak. Also, he has no feeling in his mouth and as a result, can not determine when all the food has been voided from the pallet. So, for now, solid food is out. Because he was on Plavix (blood thinner) for SO LONG (about 5 to 6 months @ 5x per day), when he came off of it for the surgery, the blood was no longer able to sqeeze through the blockages.

Any drop in his blood pressure, and the blood simply would not go through depriving the brain tissue on the other side the benefit of oxygen.

Plan of action now is to introduce a bit of plavix now, and use medicine to increase his blood pressure. Once the revascularization process from the surgery is complete ( 6 to 16 weeks) all should be good.

He doesn't look well. I tell myself it is the anesthetic from the angio procedure today. He is having tremmors in his right arm that he can't control. His speech was about the same, but the volume was very low.

Doctor Deshmukh believes that the damage is likely permanant. Physical therapy and speech therapy will be intensive. Ken will be released (hopefully this weekend) into a 24/7 rehab facility. Not sure how long he will stay there.

I'm tired. More tomorrow.

Sarurday, October 17th, 2:20pm

I'm filling out medical power of attorney paperwork.

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.