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.