Skeptic Friends Network

Username:
Password:
Save Password
Forgot your Password?
Home | Forums | Active Topics | Active Polls | Register | FAQ | Contact Us  
  Connect: Chat | SFN Messenger | Buddy List | Members
Personalize: Profile | My Page | Forum Bookmarks  
 All Forums
 Announcements
 Special Announcements
 Derek at Skepticality...
 New Topic  Topic Locked
 Printer Friendly Bookmark this Topic BookMark Topic
Previous Page | Next Page
Author Previous Topic Topic Next Topic
Page: of 5

filthy
SFN Die Hard

USA
14408 Posts

Posted - 10/11/2005 :  07:10:02   [Permalink]  Show Profile Send filthy a Private Message
quote:
Originally posted by beskeptigal

This is a very good sign. Brain trauma patients like this should have a fairly good chance of full recovery. It may be only a few weeks to months before he is close to normal. Of course I'm guessing without any medical records of the situation but my experience has been that similar patients do well.

Hopin' you have a good call on this, B'gal. Hopin' derek is back with us soonest.

[]8

"What luck for rulers that men do not think." -- Adolf Hitler (1889 - 1945)

"If only we could impeach on the basis of criminal stupidity, 90% of the Rethuglicans and half of the Democrats would be thrown out of office." ~~ P.Z. Myres


"The default position of human nature is to punch the other guy in the face and take his stuff." ~~ Dude

Brother Boot Knife of Warm Humanitarianism,

and Crypto-Communist!

Go to Top of Page

Kil
Evil Skeptic

USA
13457 Posts

Posted - 10/11/2005 :  23:07:07   [Permalink]  Show Profile  Visit Kil's Homepage  Send Kil an AOL message  Send Kil a Yahoo! Message Send Kil a Private Message
Derek Update 9:40pm 10/11/05 (where swoopy whines a lot)


quote:
Swoopy:

Another day.

Boy, what a day it was. Someone mentioned to me that actually right now, Derek has it easier than we do. And today I believe them. Not every day, mind you, but today. Yeah. He got bathed, he got pampered, he got to watch a lot of TV. He got visited by people who love him and hold his hand and pet his head and tell him how awesome he is. Because he is.

We got to figure out what comes next. And that, my friends, is a special dance. It goes like this:
The doctors at the hospital say "he's ready to move on"
We say, "okay where?"
The hospital case worker lines up facilities to come evaluate Derek.
They come, they say "yes we can, or here we are - what do you think, or nope sorry - no room, and he's not ready."
We listen. We ponder, we research, we tour. We call and ask questions. And more questions.
The insurance company says: "this is what we'll do."
We say, "are you sure? what we read in your policy says ___."
The Insurance company says, "oh, we'll check on that...and get back to you."
And sometimes they do.
We check, we double check, we ask more questions, we call.
We talk to doctors again.
They're confused too.
We talk to case worker after case worker at insurance, hospital and facilities.
Some caseworkers have the same first name, but work in different places, which of course is fun.
They say they'll think about it, and talk to us tomorrow.
They say they don't know, and they'll check on it and call us back.
They say we can reach them at their pager or cell phone.
They aren't as easy to reach as they think.
We'll do more tomorrow, we're tired from today.
And maybe tomorrow there will be the answers from today.
Then. we go visit the man in question.

Susan leans in and asks Derek "can I have a smooch?" Derek nods. Derek leans up a little, Derek puckers up.
Our day was all worth it.
We'll figure out tomorrow, when it comes.

As the doctors can attest to Derek has made huge strides, even in this last week. He hasn't SAID anything verbally yet. But with his eyes, and response to commands to squeeze hands, nod, smile, and lots of movement, he's talking to us. He's also awake a lot more than not. We're thrilled about this part. Choosing what to do next IS - no matter what his insurance company or anyone else says - Our choice. They work for us. And we'll get Derek the best care he can get, in the right place, for as long as he needs it. But getting there it IS a full time job. For even the most organized of people. Cause we are those people.

Make no mistake, next time Health Care reform is a matter of public debate, you can bet I'm weighing in. We're having a tough time, but we'll get through it. I can only imagine people who don't have support of friends and family, or supportive human resources departments in their company to ask. Or people who aren't well educated, and can't communicate well, or people who don't have good health insurance, or any health insurance for that matter. We actually have it pretty good.

It's like anything else. You comparison shop, see what you can afford, find out what is the best option, and pick that one. We sort of thought we'd done that, and our best option - The Shepherd Center, said that Derek isn't ready for them yet. And besides that, they don't have a bed for him, and may not for awhile. So we're on to plan B, which actually looks - to me - like a possibly better deal. More on that tomorrow when we find out more.

We have no less then about 20 people we have to talk to every day, to make sure things are going as they should, and that all of our bases are covered. Not to mention the many folders, for every facility, every bill, every insurance claim, every disability check, every everything. Copied, filed, mailed, faxed, paid for. In triplicate. In a pear tree.

I'm not whining, it just..blows my mind. Susan gets the brunt of the calls, because she's the one who makes the decisions. I get most of the paperwork, and the leg work. Together, I think we could rule the world.

The up side? More improvement with Derek. And by all accounts, everyone, including Derek's doctors, think he's doing amazingly well. They have high hopes for him, and so do we.

He does still have a little congestion in his left lung, but a bronchoscopy today loosened a lot of that up. He had some productive coughing, though I have to admit watching someone stick a scope down your throat (trach) and inject saline solution into your lungs to make you cough, isn't pleasant. But Derek handled it really well. I was there this morning when they decided to do it, and Dr. Akarino (pulmonary) encouraged me to stay. Back from his week away, the doctor said he was so encouraged by Derek after not having seen him for a week. He seemed really excited about his progress.

Derek's blood pressure was really good this afternoon, and he's got no fever at all. He's ready to jump out of that bed, and start reciting poetry to us. I just know it. We'll get there. And when he's better, Susan and I are going to Hawaii. And we're not answering the phone there, except to say yes to big drinks with little umbrellas in them.

More tomorrow, with less whining.

- Swoopy


Uncertainty may make you uncomfortable. Certainty makes you ridiculous.

Why not question something for a change?

Genetic Literacy Project
Go to Top of Page

Kil
Evil Skeptic

USA
13457 Posts

Posted - 10/13/2005 :  08:00:31   [Permalink]  Show Profile  Visit Kil's Homepage  Send Kil an AOL message  Send Kil a Yahoo! Message Send Kil a Private Message
Post subject: Derek Update 11:40pm 10/12/05 (where it gets cool)

quote:
Swoopy:

So yesterday. Wasn't the best day ever, with a small exception.

We did, in the evening, get a new option for Derek's rehabilitation. The facility located right at the hospital where he already is, invited us on recommendation of Derek's doctor, to tour and speak with staff. We were under the impression early on, that Derek wouldn't be ready for rehab at North Fulton until he was able to participate in three hours of rehab a day, and that he would need to be off of the respirator and more responsive to do so.

Upon further consideration it seemed that the rehab center was moving to bring more critical brain injury patients in to their facility as they were having excellent success in some of their therapies, using medications to stimulate the brain, and they felt Derek was an excellent candidate for their program.

We of course thought we were sure we knew from our research what we wanted, and in the end what we had thought, turned out not to be our best option. Wednesday would be about finding out what Derek's doctors recommended we do, since Shepherd had no room for us, and also didn't think Derek was ready for them.

The time that Dr. Harben took with us at the rehab facility at North Fulton to reassure us, and discuss what he would be able to do for Derek now and down the road, as well as the very communicative and friendly staff that would be working along with the doctors who had already been taking care of Derek, seemed like a really great option to us. We would be able, as immediate family, to visit as much as we wished to and would be encouraged to participate in his rehabilitation. We would be able to be there more because of the hospital's close proximity to us, and we wouldn't be starting from scratch with new facility, new staff, new everything. If Derek's insurance would cover it, and his doctors agreed, we were all for it.

Today, although really long, I'd totally do all over again. A couple times.

This was a very cool day, and in the days to remember of Derek's Recovery, this is one of the big ones.

I got in to the hospital as I do every morning, around 8 and Derek was awake already. And we do as we usually do, hold hands, watch the news. He's been, more over the last couple of days, paying more attention and seeming more aware of what is going on around him. Today he was definitely more aware, and more awake. He already had a schedule and the nurse let me know that the plans were that Physical Therapy would be coming in to move his limbs around, see what he was able to do on his own and then get Derek back into the big recliner chair for awhile. The more he's out of bed, the better off he is.

The physical therapist was impressed with Derek's range of movement and that to some degree he could do some part of everything she asked of him. These were small things, but responding to commands nonetheless. Especially since he hadn't been having very much PT yet, because of the trach situation. He could wiggle toes right and left, help the therapist lift his arm up, turn his head and such. The therapist, the nurse and I used the hoyer lift and got Derek into the chair, where he looked really glad to be upright. He also was able to let his legs dangle a bit and put his feet on the floor, again good to be in a new position. Once in the chair he shifted around some to get comfortable and seemed anxious to do something else.

Once in the chair we really started to talk about stuff. He seemed so very alert -
"Does it feel good to be sitting up?" He nodded his head definitely yes.
"Can I get you anything?" Pursed lips and furrowed brow as if thinking, opening his mouth as if he'd tell me if he could, but not quite there yet.
"How about if I bring a book and we can read." Nod of yes.
"Better than TV?" Nod of yes.
"How about your iPod, would you like it?" Nod of yes.
"What music should I put on it?" Much thought, mouthing, but no definite answer.
"Susan and I have a plan to smuggle the dog into the hospital. Do you think we should?" Derek shook his head no and made a face.
"You don't think so?" Again, he shook his head no.
"How about a picture of the dog?" Yes, and a smile.
All the while I would alternate asking him for either hand, making him lift it to give to me, and he would. A couple of times he reached up and scratched his nose.

After a bit, a woman I hadn't met stuck her head in and asked if I would be there awhile. I said I would and she was excited, because she was from occupational therapy and had been watching and was very impressed with Derek's performance. While he was awake and alert she wanted to evaluate him. And a few minutes later she came in to do just that.

Derek gave her his full attention, and participated while she asked him some very complicated and involved questions. Some of the big ones being:
"Do you understand what people say to you?" Nodding yes.
"Are things a little slow or fuzzy?" He thought about this one, furrowed his brow and really tried to tell her.
"You can hear the voice in your head saying what you want, but you can't make the words yet?" Yes.

She too requested movement from him from his arms and legs, hands and feet. She asked me what his job was, I was explaining it to her and then I told Derek, "He's a Suuuuuuper Geeeeeenius." Oh my, the face he made. Exasperated, rolled his eyes, and grimaced, as if I was so silly.

The therapist was quite impressed. She went to write down this fantastic evaluation, as things progressed. I started talking to Derek more, about some of the same things we had been. From working hard with his arms and legs he had gotten a sweaty brow. He reached up to wipe it, and I offered him a washcloth. He took the cloth from me, and wiped his forehead. Not just casually, but took the time to get the cloth in his left hand just so, in very similar fashion to the way that a lot of people have probably seen him do in the past. He switched the cloth from hand to hand, depending on which one I was holding, and would, as he felt he needed to, wipe his eye or his brow. I pointed it out to the therapist who was sitting just outside the room and she was further amazed.

Derek's nurse said that discussion was starting about getting Derek to rehab ASAP. I got up to call Susan on my cell phone, which is something we don't usually do in the neuro ward. I stood a bit away from Derek and let Susan know what was going on, and while I was talking, noticed how intently Derek was looking at me. I put my cell phone in his hand, and he moved it right up to his ear. Though he didn't vocalize, he worked very hard at mouthing things, and looking like he would say a lot, if he only could. All of this was noted, not only by therapy and neuro staff, but by Derek's doctor who had been watching.

In fact Dr. Akarino came to the door of the room where Derek's chair was, and started telling me that they were seeing about getting him over to rehab today. I mentioned I was talking to Susan, and he took my phone from me and they had a long discussion. I got the phone back and Susan told me that the doctors felt, that if it were there family the best choice to make now would be getting them into their rehab today. He didn't need to go to a facility to concentrate on his breathing or anything else, he could participate in effective rehabilitation and should as soon as possible. We agreed, and Susan left work at lunchtime

Uncertainty may make you uncomfortable. Certainty makes you ridiculous.

Why not question something for a change?

Genetic Literacy Project
Go to Top of Page

Kil
Evil Skeptic

USA
13457 Posts

Posted - 10/13/2005 :  08:28:58   [Permalink]  Show Profile  Visit Kil's Homepage  Send Kil an AOL message  Send Kil a Yahoo! Message Send Kil a Private Message
Looks like Derek is firmly on the road to recovery! The above post is by far the best news yet. Swoopy has been amazing, to say the least, with these updates and her dedication to Skepticality as a going concern even while spending so much of her time with Derek and Susan and working with them on his recovery. She is one fantastic lady! Anyhow, go Derek!

Uncertainty may make you uncomfortable. Certainty makes you ridiculous.

Why not question something for a change?

Genetic Literacy Project
Go to Top of Page

Kil
Evil Skeptic

USA
13457 Posts

Posted - 10/14/2005 :  18:18:20   [Permalink]  Show Profile  Visit Kil's Homepage  Send Kil an AOL message  Send Kil a Yahoo! Message Send Kil a Private Message
Post subject: Derek Update 11:50pm 10/13/05 (short one)

quote:
Swoopy:

Yesterday's post was SO good...I'm not gonna post today.

Actually, I can't really post today. I had so much work to catch up on, that I didn't get to the hospital. It's very weird. And I have guilt.

Susan had taken today off intentionally, and enjoyed having the whole day (and the freedom of visiting hours that aren't restricted for immediate family) to sit with Derek. So that was good for her, and him too.

His behavior today was much like yesterday with the added note that he's a little agitated. This is actually a good thing, it means he getting close to moving up on the scale for rehab assessment, from Rancho 3 to 4.

Rehabilitation centers may use a scale called the Rancho Levels. The eight level scale was developed by the professional staff of the Rancho Los Amigos Hospital in Downey, California to describe the stages of recovery after brain injury. What follows is a simplified explanation of each level of recovery. Remember, the patient never fits neatly into one level of the scale, but rather into a general area, exhibiting characteristics of several levels. Also be aware that individual patients progress through the levels at different speeds, some skipping levels, others "getting stuck" for a while.

The following is a brief description of the Rancho Los Amigos Scale of Cognitive Functioning:

LEVEL 1 - No response. The patient appears to be in a very deep sleep or coma and does not respond to voices, sounds, light, or touch.
LEVEL 2 - Generalized response. The patient moves around, but movement does not seem to have a purpose or consistency. Patients may open their eyes but do not seem to focus on anything in particular.
LEVEL 3 - Localized response. Patients begin to move their eyes and look at specific people and objects. They turn their heads in the direction of loud voice or noise. Patients at Level 3 may follow a simple command, such as "Squeeze my hand."
LEVEL 4 - Confused and agitated. The patient is very confused and agitated about where he or she is and what is happening in the surroundings. At the slightest provocation, the patient may become very restless, aggressive, orverbally abusive. The patient may enter into incoherent conversation.
LEVEL 5 - Confused, inappropriate but not agitated. The patient is confused and does not make sense in conversations but may be able to follow simple directions. Stressful situations may provoke some upset, but agitation is no longer a major problem. Patients may experience some frustration as elements of memory return.
LEVEL 6 - Confused but appropriate. The patient's speech makes sense, and he or she is able to do simple things such as getting dressed, eating, and teeth brushing. Although patients know how to perform a specific activity, they need help in discerning when to start and stop. Learning new things may also be difficult.
LEVEL 7 - Automatic, appropriate. Patients can perform all self-care activities and are usually coherent. They have difficulty remembering recent events and discussions. Rational judgments, calculations, and solving multi-step problems present difficulties, yet patients may not seem to realize this.
LEVEL 8 - Purposeful and appropriate. At this level, patients are independent and can process new information. They remember distant and recent events and can figure out complex and simple problems.

He's more alert, and agitated and at times displaying what is described as inappropriate behavior. LIke, if it's hot he doesn't think he needs to wear his gown. And to those who know Derek, extra nudity really isn't ALL that strange.

In any case, he had lots of therapy today and did begin drug therapy on a

Uncertainty may make you uncomfortable. Certainty makes you ridiculous.

Why not question something for a change?

Genetic Literacy Project
Go to Top of Page

Kil
Evil Skeptic

USA
13457 Posts

Posted - 10/14/2005 :  22:10:43   [Permalink]  Show Profile  Visit Kil's Homepage  Send Kil an AOL message  Send Kil a Yahoo! Message Send Kil a Private Message
Derek Update 10:20pm 10/14/05

quote:
Swoopy:

Today, I was greeted this morning with Derek sitting up in a wheelchair, fully dressed in shorts and a t-shirt, shoes and socks. I think he's lost about 35 pounds since he's been in the hospital, and it really shows when he's sitting up. He looked so..fantastic. I'm going to ask him soon, if he'll let me take his picture, if he'd mind. He looks so great, and I know those who can't visit and family who live far away, would love to see him.

He was very alert and had just had some occupational therapy. We "talked" for a bit (he nods, or mouths, or squeezes my hand or follows commands), and then I helped the nurses get him back in bed with the lift. He did, however, when he was having therapy (the therapist told me later) sit up on his bed with his feet on the floor, only partially assisted for a long while. He also helped get himself dressed. I would suspect they'll let him get out of bed on his own, soon.

They're really going to work to get him off of the catheter, and once he's off of the respiratory system (that is oxygen and a therapeutic mist he inhales to help his lungs, he'll be able to really move more and get out of the room too in the wheel chair, and we can take him outside. It's been really nice here, very fall like, and I know he'll enjoy the fresh air.

After he was situated in bed again he drifted off to sleep, because he had been working hard all morning. They wake patients early, and he begins his drug therapies early too so that they wear off by bedtime and he can fall asleep. More or less though, he was up all day.

Susan and I went back in the early evening, and he was wide awake, still dressed but still in bed, and he was wearing his glasses. He watched some Firefly on DVD with us, and after the episode was over it was time for Firefly to actually be on Sci Fi on TV. I gave Derek the remote and asked him if he knew which button turned the TV on. He did, and turned the TV on. Then I told him we wanted channel 72, he got the 7 but wasn't fast enough with the 2. Still, really awesome.

He has some charts with Yes and No and pictures with words for common things he might want, or answers to common questions. The speech therapist is encouraging us to start using those with Derek as well as asking questions, so that he'll begin to associate words and letters with the things he wants to say. We'll be doing that more over the weekend.

I did however, ask Derek to mirror with his left hand, what I was doing with mine. Thumbs up, he matched me. First finger up, he did the same, two fingers, still with me. And then the change up...bunny foo foo. He smiled and followed suit.

At one point I was giving Susan a ribbing because she wanted to clean Derek's glasses. This is something we've always gone round and round about. She can't imagine how he sees through them when they have lint on the lenses, and he hates how she wipes them and then they just get smeary. So she took his glasses off and started wiping them on her shirt. He looked SO exasperated, so she took them into his little bathroom and I said..."oh...great, now she's using toilet paper to wipe them." Derek started to LAUGH, very hard. There wasn't any noise, but the expression and how his body shook were exactly the same. Then we all laughed together.

The hard part of the evening now is when we're tired and ready to go get some rest ourselves. We know he likes having us there, but we also can't be there every minute. So not being there too much, is as important as visiting in a way. But now that he knows we're there, and we're pretty sure he knows most of what we're saying and doing, when we tell him it's time for us to go, he knows that too.

We asked him, if that was okay with him, that we were going home for dinner and we'd see him in the morning. He thought about it a minute and nodded yes. We asked if he was really sure, and he furrowed his brow and nodded more emphatically in a way that really seemed to say, "yes..it's fine, really." Susan got her goodnight kiss, which is still just as awesome as the first time. She asks for the kiss, he leans up and puckers up. It's so cool.

Instead of going to the hospital wondering what might be wrong, or if there will be anything to see, we go excitedly unable to wait to see what new great things will be going on. He continues to amaze not only us, but everyone there. People who have been working on his case, like the respiratory therapists, since he first entered the hospital over a month ago, stop to tell us how impressed they are with how he's doing. It's almost hard to remember those really dark days when we weren't even sure if he'd make it through the night. Now we know he will, and that he'll see us in the morning, know we're there, and smile.

It's almost making me into a morning person.

- Swoopy



Uncertainty may make you uncomfortable. Certainty makes you ridiculous.

Why not question something for a change?

Genetic Literacy Project
Go to Top of Page

Kil
Evil Skeptic

USA
13457 Posts

Posted - 10/17/2005 :  09:49:12   [Permalink]  Show Profile  Visit Kil's Homepage  Send Kil an AOL message  Send Kil a Yahoo! Message Send Kil a Private Message
Derek Update 11:45pm Sunday 10/16/05

quote:
Swoopy:

This weekend was great. So much happened, and we were there for most of it, more hospital than home. However when Derek is awake and participating, since he can't be home, we bring home to him. Thankfully the staff is accommodating and doesn't mind that we're taking over.

Dressed and sitting way up in bed, but not out of it yet when we got there this morning. But physical therapy arrived soon after and we all agreed that Derek seemed to really have the urge to stand up on his own. On Saturday he was up in a chair for six or so hours before indicating he wanted to go back to his bed for a nap, but for a portion of the afternoon, he sat on the edge of the chair with both hands on the arm rests, as if he was going to try and stand. The nurses convinced him, because he wasn't much listening to Susan and myself, that he really shouldn't try yet.

Today though, we did try. Derek did well getting to the edge of the bed, and with me making sure he didn't fall backwards, and a physical therapist on either arm, Derek stood up and we helped him pivot into the chair that was waiting. He did need to be hoyer lifted back to bed, because the chair sat lower than the bed and they couldn't count on there being enough help when he was ready.

Derek sat in the chair and we did lots of ankle, knee and leg flexing exercises. He's lost a lot of muscle mass in his arms and legs, which were once very thick, and now they're quite narrow. Even so, he has more strength than expected. They say for every day that you spend in bed for an illness, it takes three to get back to where you were physically, when you got sick. Derek was in bed for thirty five days, so we know we've got some work to do.

Also, this weekend we gave Derek a computer to play with and pen and paper for the first time. There is some definite computer recognition, and he really likes moving his finger around the track pad, and purposefully opens and closes things. His fine motor skills are what I think he's lacking in, as typing, like trying to write with a pen, is difficult. However, towards the end of today, while we were at lunch actually, Derek made some recognizable letters with the pen. I kept encouraging him to write larger, and the letters that we saw when we came back were much bigger. His approach to writing is more like drawing, trying to shape each letter with many strokes, and keeping the lines together is the hard part. This too, seems like it could progress quite well, as over only a little time over both days, he made marked improvement.

He does get very frustrated, as it seems there are lots of things he wants to do, and no doubt it's true, but he just can't figure it out or do it the way he wants to. Even simple things, like writing or recognizing letters of the alphabet. This is perfectly reasonable for someone who has a brain injury of this magnitude. In fact his progress so far has been phenomenal, and we're expecting him to keep doing well.

Though it's hard for us to watch him not being able to do everything he used to, we have to remember that it's much harder for him, as he realizes his current limitations. I have no doubt though, that he has the tenacity to work through it, and get to where he wants to be.

So, more therapy this week, and we'll keep you updated on milestones. Derek's mom will be here tomorrow to spend a couple of days. Derek is excited about that, and so are we.

- Swoopy





Uncertainty may make you uncomfortable. Certainty makes you ridiculous.

Why not question something for a change?

Genetic Literacy Project
Go to Top of Page

Kil
Evil Skeptic

USA
13457 Posts

Posted - 10/19/2005 :  08:18:46   [Permalink]  Show Profile  Visit Kil's Homepage  Send Kil an AOL message  Send Kil a Yahoo! Message Send Kil a Private Message
Derek Update 11:40pm 10/18/05

quote:
Swoopy:

Wow. How did it get to be Tuesday?

Today seemed like a week long, but it was probably because we, and more importantly Derek did SO much. I couldn't probably even recount every cool thing, but we'll hit the big big highlights.

Derek's mom arrived yesterday afternoon, and he was SO elated to see her, it was written all over his face. He scooted up to the edge of the chair he was sitting in, and she was flabbergasted at his progress. The last time she saw him, only a couple of weeks ago, he was in neuro trauma, not awake very much, but able to squeeze her hand.

We stopped into neuro trauma on the way out of the hospital last night and saw Reggie, one of many fabulous nurses who took care of Derek in some of his first and darkest days there. We told him how awake Derek was now, and that he sits up, and had that day done his first bit of assisted standing. He was so amazed, and said he would look in.

Today we arrived just before Derek began his rehab, and as discussed the night before, his catheter had been removed. One less tube for him to worry about. I'm sure his bladder was thrilled, we certainly were. While we waited for his therapy to start I got out the clipboard with paper that we've been writing and playing games on, and Derek wrote his first legible word. His fine motor skills make it hard to manipulate the pen the way he wants to, but with practice he's come really quickly in just a couple of days. His writing was just tiny dashes and dots on Saturday. Yesterday some very nice single letters in no particular order. Today, a word. I'm expecting a sentence tomorrow.

Conspiracy theorists and those who believe we are not alone, take note. Derek's first word was Contact.

He then was O as I was X and beat me at tic tac toe. Then it was time for therapy We then so his mom got to watch him sit up in bed, move to sit on the edge of the bed and wash up with a washcloth before putting on his shirt. We stepped out for the pants part. Then with the aid of a walker, and a bit of encouragement on the initial push up from the bed, Derek was standing...and stayed standing very tall for a good five minutes before sitting down in a controlled fashion. He nodded that it was good to be standing. For someone who has lost so very much muscle mass during his hospital stay, it's amazing how well he moves.

He stood several more times, and while standing, brushed his teeth. He then used the board they have that works like a bridge to scoot from the bed into his wheelchair.

Shortly after therapy, the respiratory therapist who has been working with Derek's trach from the beginning, through the difficult transition times, came to see what size the "weaning" trach should be. The new trach would close off, allowing Derek to try to start speaking, and lots of other things. And while he noted it, we talked about the fact that he really wasn't sure it was necessary for Derek to really transition again.

Moving forward with Derek meant getting rid of the trach, and since his chest xray on Saturday was clear, and a lot of the medications he had been getting he wouldn't be needing, and that he could continue breathing treatments with a simple face mask, it was his opinion it should just come out. I said we were ALL for that, because Derek was mouthing stuff so much and wanted to talk, and we weren't looking forward to a whole new trach at this point.

A few minutes later he came back with another colleague who had been an important part of Derek's respiratory therapy since his critical days, and said "we're taking it out in a minute." Whoa. Taking it out? Just like that? Yep. Consensus was from Dr. Akarino (respiratory doctor since neuro) and the rest of the pulmonary team, that out was best. Out was moving forward, toward talking and eating and drinking and normalcy.

His progression since last Thursday, his first real day in rehab, has been so amazing to everyone there, and especially us. That he could get out his catheter and his trach and be free of tubing and wires that tied him to his room for the first time, in one day was hard to fathom. But that's just what happened.

No sooner could I say "boo" and it was done. Very easily, and Derek didn't make a peep. And with a dressing over the hole, that is expected to close up very quickly and almost no blood, Derek no longer had the humidifier mask over his trach, or the tube. He had been pulling the mask off a lot yesterday, he was so sick of it. I was, of course, on the phone with Susan this whole time, who realized this one another important day, and she left work to come see, and hopefully hear Derek.

Free of his tubes, Derek was finally interested in the possibility of sitting in the wheelchair and moving himself in it, with small steps of his feet. Therapy had encouraged him to try it more, but with no where really to do, he hadn't shown much interest. Today, was a different story.

He wore a paper mask (as we're still under precautions for MRSA and wear gloves and such) and used little steps with his feet to move the wheelchair out of his room...and down the hall...past the nurses station...around the corner..and down the very long hallway. Where a nurse passed by us with a tray...that had Derek's lunch on it. A wonderful member of the janitorial staff, who has been in Derek's room nearly every day, and who I see every just about every morning, happened to be standing there watching him, amazed, again - everyone is. Most especially his mom, who was there for the whole thing.

And now, he could have lunch? Seriously? Now that his airway was clear, he was allowed food and drink as he wanted it and they would still supplement his diet with tube feeding to keep his calories up. Did he want to go have lunch? Yep, he pivoted the chair around with small steps and then we went right back down the long hall, past the nurses station and into his room. Where he promptly picked up a fork, and cut off a small bit of meatloaf and ate it. I freaked a little, and I went to make sure it really really was okay. And sure enough, it was. Derek fed himself, albiet with smaller bites, the same as he always has. And drank iced tea with a straw, all unassisted. Be still my heart.

Was there talking today? Actually yes. After his tube was out, Derek's mom called Derek's dad, where Derek responded some to questions. His voice isn't at all loud, and we lean in close to hear him mostly. He's clearing his throat, and it got somewhat louder as the day went on. Some responses and some words were right on target. Many were not. But he's aware of it. He's only hearing his voice for the first time outside of his head, in over a month. What his brain thinks and what comes out of his mouth isn't always in sync, but again, as the day went on, that got better too. He's still in the habit of nodding his yes and no, so we're pushing him for vocal responses, and getting them most of the time.

Speech therapy can begin in earnest, and I suspect now that he's free of the tubes, he can go to the gym for physical therapy and use the parallel bars to start working on walking. I suspect we'll be in that wheelchair a lot less in a week. In fact when we went to lunch, Derek had sat up in bed, hoping to go to the bathroom on his own. He of course knew he couldn't stand up, and now he's under constant watch so that he doesn't get up when no one is there. He seems to understand that he shouldn't. But we all know that when Derek wants to

Uncertainty may make you uncomfortable. Certainty makes you ridiculous.

Why not question something for a change?

Genetic Literacy Project
Go to Top of Page

Kil
Evil Skeptic

USA
13457 Posts

Posted - 10/21/2005 :  18:10:59   [Permalink]  Show Profile  Visit Kil's Homepage  Send Kil an AOL message  Send Kil a Yahoo! Message Send Kil a Private Message
Derek Update 5:00pm 10/21/05

quote:
Swoopy:

Wow..there goes the week. What we're really looking forward to is tomorrow, we're going to wheel Derek outside for the first time and we're going to let him visit with the Remy dog. Thanks to Derek's co-workers we got a huge poster of Remy that was printed on a large format ink jet printer. It almost feels like the dog is there all the time. We know that Remy is looking forward to seeing Derek, almost as much as Derek is looking forward to seeing him, and that will be great fun. Not to mention getting out of the hospital with the nice weather we're having.

Derek got his trach tube out on Tuesday, and his catheter, so he's now free of all wires. This means that his therapy for the rest of the week has been much more productive, and he's been able to go down to the rehab gym for some of his physical therapy sessions. He's been walking with a walker for the last three days while in therapy, and doing really well. He does tire easily but his strength is really improving every day.

He's also been eating regular meals, mostly on his own. Things still obviously don't taste quite right and some foods taste better to him than others, but also it seems that the foods he liked and didn't like before, have remained the same. I wasn't at the hospital when the food services person came to find out what to order for him for the rest of the day and the next morning. However, she came back later in the morning and said that he had communicated really well with her about what he wanted, and sure enough, the next day instead of eggs, which he doesn't like, Derek had cereal that he does. He also ordered a tuna sandwich for dinner, and really enjoyed that too. This afternoon he had a hamburger and potatoes and chocolate cake, and he ate close to 80% of his entire meal. They now have him on what they call a "calorie count" where a form is filled out to tell them how much he's eating, so they can compensate with tube feeding, but also as he eats more, they can back away from doing that. We're hoping that the peg line that goes directly to his stomach will be able to come out before he goes home, because it's the last tube he has on and he doesn't like it much.

As I type this, I'm on the dial up connection in his room, and Derek is snoring loudly. He had another busy day, but he also had his first shower. After his afternoon therapy session he was able to stand up, with assistance and sit on the edge of his bed, scoot up and lay down on his own. This is another thing we are hoping to do more of, instead of using the lift. He positioned himself on his side, which is the way he prefers to sleep, and is curled up contentedly and snoring just the way he always does. I'm sure he's enjoying being off of his back for a change.

He's speaking more and more, but mostly when he's very well rested and awake. You'll be surprised, when you hear him, that he's very soft spoken and that's a pretty big change for Derek. His level of understanding us, is again, better when he's well rested. He's very sharp and alert in the morning, and as the day wears on, some of that tends to fade a little. It's simply a matter of building up his stamina and that will definitely happen over time.

Every week Derek gets evaluated by the team of people who are treating him here, and we get a report. It's the report basically though of what he was doing the week before, and by the time we get the report, it's old news.

We have been somewhat overstaying our welcome here at the hospital, and generally a big part of that is the confusion over how much we're supposed to be participating while we're here in his basic care. Family members who help out, are more or less allowed to do as much as they can, and we've been doing an awful lot. This prompted some concern from us, that if we get too tired from doing all of this, what happens?

We also had some concerns about him getting enough actual therapy time because of all of the other things that he has to do, like get medications, and get baths, and eat which all take a lot of time - and then the actually resting that he needs because he gets so easily tired out. Our concerns were addressed immediately by both case management and the heads of the department, and they felt not only were they valid, but very good points that the whole team should hear. Susan and I have a meeting on Monday morning with all of the team members working with Derek, as well as his doctor to discuss how some of the medications that he is on to stimulate his brain, are doing.

If we're doing all that other stuff, we're not really spending quality time with him, which is really what our visits are supposed to be about. Do I mind the shaving and teeth brushing and everything else that a person who cannot do all of their own care needs? Not at all, but we'll be doing that when he gets home, and this time while he's in the hospital, we're supposed to be learning about how to care for him and help him, not just doing it. This made for some very long and anxious days for both of us, and I haven't been able to blog as much (easier now that I can do it from the hospital) simply because when I get home I need to eat, shower and sleep so that I can get up early and start all over again.

Susan has been getting up at the same time, going off to work all day and then coming to the hospital after. We stay with Derek through his dinner and more often than not, a few hours after that, he's sleepy and we tuck him in to head home. Most of our days are fourteen or fifteen hours long, and finding time to fit anything else in there has been a challenge. I'm not whining, because watching Derek recover, and the strides he's making, have been well worth it, and will continue to be. But I do feel some guilt over some of my other responsibilities that have had to slide some during this time. Thanks for understanding when I don't return phone calls and email as fast as I should.

Derek got online for the first time this week and surfed a little, I started to play some of the most recent Skepticality for him, the one where Fraser Cain interviewed Tony Youens, but he interupted me and started talking about (as far as I could make out) how I didn't need to do it all without him, and that it was okay. I in turn told him that it WAS okay and that things were fine with the show, and not to worry, and about Creative Loafing naming us the best local podcast in Atlanta. He said "very cool". While he was looking at Skepticality.com he went right to the forums and went to post something. He had trouble typing his login, and after awhile lost interest, but he realized he wasn't hitting the keys he should and kept correcting himself with the backspace key. Some tasks, as he struggles to complete them, put him into a frustrated loop, and then it's usually best to move him on to doing something else.

As a whole - this week has been amazing. We are again, far ahead of where we were a week ago. I can't wait to see where we'll be next week at this time. I suspect, walking and standing a lot more. Being more independent in using the bathroom, and walking to and from places in the hospital more instead of always being wheeled there. One of the things physical therapy said he'd start working on next week, was navigating stairs. The have a very good set of practice stairs with railings in the rehab gym. They know he'll need to work on that for when he comes home. Right now the target date for that has been determined to be Novemb

Uncertainty may make you uncomfortable. Certainty makes you ridiculous.

Why not question something for a change?

Genetic Literacy Project
Go to Top of Page

Kil
Evil Skeptic

USA
13457 Posts

Posted - 10/24/2005 :  19:20:36   [Permalink]  Show Profile  Visit Kil's Homepage  Send Kil an AOL message  Send Kil a Yahoo! Message Send Kil a Private Message
Derek Update 8:00pm 10/24/05

quote:
Swoopy:

On Saturday morning Susan and I took Remy to see Derek. This was awesome, for everyone. Derek had been having his physical therapy and the end of it was wheeling the wheel chair outside. He then walked with the walker, the length of the sidewalk just outside the Rehab unit, (about 20 yards). There is a garden area that backs onto the parking that we have access to (via security card) with lots of grass, trees and a bench.

Derek got sat back down in his wheelchair and I brought Remy, who we call The Snoot, out from the car. As soon as we rounded the corner, Derek got a big smile and a surprised look on his face. He said very loudly "My Snoot!" Remy was pretty waggly too, and we put a pillow on Derek's lap, and he held his dog for quite awhile. It was a great time, and one we're planning to repeat about once a week.

Also, throughout the weekend, Derek's awake time has slowly increased, as has his energy while he is awake. We also went from both of us really digging in to help Derek stand up and a walker to do a lot of leaning on, to Derek being able to stand up pretty much on his own and the walker is there because it has to be.

Also, late last week, if it was after four o'clock in the afternoon, Derek wouldn't be able to stand up, he didn't have enough energy left. Now, he can stand up just about any time we ask him to. It takes him a moment to catch his breath after he does it, but then he's fine.

Aside from standing a lot, Derek is now walking, not just with a walker, but just holding hands with the physical therapist.

Today in fact, he did stairs for the first time. They have a small stairway that has two steps up to the middle and two steps down the other side, with railings on both sides of the stairs. Unassisted, Derek held on to the railings, but didn't really lean on them at all, and went up and down the stairs, four times.

This is good preparation for going home, as we have so many stairs there. We suspect when that day comes, still as far as we know that will be November 14th, he will be able to come into the house through the garage up the smallest set of stairs we have (7) and will do a lot of his living on the bottom floor. This is perfect since the office with all the computers, the big screen TV, Derek's bathroom with a walk-in shower, the laundry room and his closet are all on this floor. We'll probably get or rent an adjustable bed to put in the living room for the time being, until he's cleared to take that many stairs up. However, since on his first day he did nearly as many stairs as he would need to get up there, and he has a couple of weeks more to practice, that may not be necessary at all.

Derek's voice has gotten louder too, and the percentage of conversation that is understandable, and applicable to the conversation has increased. Of the words he says, about 75% of them are words you can decipher. Of the things he spontaneously talks about, you can figure out about 50%. Of conversations that you have with him directly, and especially when asking Yes and No questions directly, it's about 75%. Considering last weekend it was a whisper, and mostly gibberish, that's a big improvement, and his speech therapists expect that improvement to continue.

Susan and I had a meeting this morning with all of the members of his team including physical therapy, speech therapy, occupational therapy, case management, head of nursing for the rehab unit and his doctor. We discussed some of the things that we felt needed improvement and we discussed the things that we appreciate most.

Derek can now take showers every other day, he just got out the access line for his IV medications that has been there nearly since he came to the hospital, and the feeding tube that goes to his stomach will likely come out in the next few days. He's no longer using it, as he can take medications by mouth with water or in soft food and he's eating a regular diet here at the hospital, which we supplement with some snacks to keep his blood sugar up when he doesn't quite eat enough of the meal. He feeds himself almost entirely independent of us.

Days are pretty full of rehab, meals and personal hygiene type stuff. When he can get a nap in, we encourage it, so that he has more strength for the second half of his day. The more rest he gets, the better his cognition is at any given time.

Keeping that in mind, we're also trying to give ourselves a little more away from hospital time, beginning this week. We've tried the patience of the staff long enough, and one of the things they continue to remind us is that we need to get rest too. When he comes home, though in many ways it will be easier, it will be a whole new set of challenges that we will be facing, and we need to be ready.

Thanks again too, for everything that everyone is doing to help us out. Don't be too surprised if we start taking people up on the help they so generously offered in the early going. More updates too as we know when Derek will be coming home for sure, and about when it's best for people who haven't visited yet, to come see him. This will likely be weekdays after six, and weekends after two or three. This keeps visits from conflicting with his therapy time.

There haven't been updates as frequently because now that Derek is so active, our "free" time is non existent. I can dial up an internet connection from his room, but again, I'm not sitting down frequently enough to make use of it right now. Soon though, I'm almost sure of it. Okay..probably not. But the reasons we're busy, are good ones.

- Swoopy


Uncertainty may make you uncomfortable. Certainty makes you ridiculous.

Why not question something for a change?

Genetic Literacy Project
Go to Top of Page

Kil
Evil Skeptic

USA
13457 Posts

Posted - 11/01/2005 :  20:38:05   [Permalink]  Show Profile  Visit Kil's Homepage  Send Kil an AOL message  Send Kil a Yahoo! Message Send Kil a Private Message
Derek Update 1:00pm 11/01/05

quote:
Swoopy:

Amazingly, as we were warned, the amount of time we have in a day has begun to diminish even more, instead of increase. Suuuuure, he'll be in rehab and busy and we'll have time to do stuff like..sleep. Silly people! That so did not happen. This is why the updates went from twice daily or more, to daily, to every few days...to weekly.

But no news, is good news, and that's true. Derek is so busy, so alert, and so verbal these days that it takes all of our cumulative powers to get him to sleep at night. Also, with his cognition that he's in the hospital, and we're going home at night without him, he wants to come too, and asks us not to leave sometimes. Derek has never liked being by himself, so this is a normal reaction, and so we just make ourselves comfy at the hospital and make runs to Harry's and Sonic (which are thankfully across the street) for meals and to bring Derek stuff when the food he's getting from the hospital kitchen isn't to his liking. On hand is a loaf of bread and a jar of peanut butter and a jar of jelly. When all else fails, half a peanut butter sandwich seems to help.

All of this is possible because the policy here in rehab, is that family can be here as much as they choose to be. This was one of the reasons too that we felt that a move to the Shepherd Center would be problematic, because they have strict visiting hours and we would only be there a couple of hours a day. While I can see the benefit in that, and that it's probably one of the ways you can get a family to pace itself and not get too overtired or stressed, a lot of the time we're spending here with Derek now, is providing him with stimulation, doing exercises and playing games. This increases his "therapy" time to double what it would be, or more, and the more we work out his body and his brain, coupled with proper meals and rest periods, and comfort and reassurance from us, the better his recovery will be - and that's the most important thing to us right now.

So..enough about US! Derek is doing, as you may suspect, phenomenally well.

-The first weekend he was here he still had the trach and couldn't talk, he could use a board to slide from bed into a wheelchair..with lots of help. He had a lift that put him in and out of bed.

- The second weekend, the trach was out, he was eating solid food and talking softly, but mostly words we couldn't understand. He could stand up but with the help of two people,and not very many time a day. He was taking steps with his walker and his balance was improving.

- This past weekend, he's eating, walking with only a hand of someone else to hold and he can stand up from any chair on his own. He's doing his own grooming (shaving, teeth brushing, bathroom stuff), short of taking a shower, where he gets a little help. He's talking a lot, and when asked direct questions his replies are 75% understandable.

The biggest thing is that he comprehends where he's having difficulties, and will pause and try to either figure out the word he's trying to say or let us know that he's having trouble. He's talked about his brain being "broken", but with half a smile and a laugh. He takes it well because we continually reassure him, as do all of his therapists, doctors and nurses that he's getting better every day.

The only tube he has left is the feeding tube in his stomach, which hasn't been used for a couple of weeks. We've been advised that the tube has to remain in place for at least 60 days before it's safe to remove it, and by our calculations that means it can come out this Friday.

Yesterday, Susan and I went to tour two different facilities that provide outpatient rehab care. Once Derek comes home, he'll get on a schedule of going to a rehab day program where he'll get more intense therapy, tailored to what he needs to work on to get himself back to functioning as close to his pre-stroke self as possible.

The North Fulton facility has the benefit of being nearby, and that there would be a continuation of communication between the therapists he had here in the hospital and those he'll have as an outpatient. It's a nice place, but it's targeted for anyone who needs any sort of rehab. Derek's physical strength and coordination are really coming along, what he needs a lot of is work on his memory, his perception and cognitive skills as well as continued speech therapy. All of this needs to be done with consideration for his brain injury, and that there are special factors that affect the way he learns things.

Thankfully, we also went to the Shepherd Center outpatient center called Pathways. We were so blown away. From the moment we showed up and saw all of the facilities, and heard about the kinds of programs they had, we were sold. Not to mention that brain injury rehab, is what they specialize in. They use computers as part of their therapy sessions, which was something we had been asking about and hadn't seen used much in his therapy up to this point. Shepherd sets goals towards getting people back to work and functioning, and that means they work with a patient's employer too, to find out what sort of skills they need work on. So computer use will play a big part in Derek's rehab there.

Pathways also has a doctor on staff there that evaluates and monitors the medications the patients are taking, and they all know Derek's doctor here at North Fulton quite well. They also have a psychological counseling department and will evaluate Derek on many levels so they know exactly what will work best for him, and monitor his responses.

The program at Pathways is a full day program, and patients take their lunch or prepare it in the kitchen there as part of their therapy. Rather than our being there all day, he'll get dropped off there in the morning and picked up in the late afternoon, probably five days a week. We are encouraged to participate in his therapy, again as much as we want to, so some days we'll be there too. But certainly not for the prolonged periods of time that we have been. The best part being..at night, he's home..with us.

So, that's the view from here. Sorry I haven't been posting as frequently, honestly I began this post on Monday..and it took until Tuesday at noon for me to have time to finish it. Derek is down in the gym with Tracy, our favorite Physical Therapist who also thinks that Pathways is the best place for Derek to continue to improve, so I'm taking advantage of the time!

For people who want to visit, get in touch with myself through email or cell phone, or if you're a Brown and Caldwell person, get in touch with Sean Kilpatrick for more information. We like to coordinate the visits so that people don't come during his scheduled therapy time, and that we don't get too many people all at once. Too much noise just causes confusion, and when there is too much going on, Derek tunes out a little and doesn't participate. One on one or two is best, for now.

More updates in a day or so, I promise.

- Swoopy


Uncertainty may make you uncomfortable. Certainty makes you ridiculous.

Why not question something for a change?

Genetic Literacy Project
Go to Top of Page

Kil
Evil Skeptic

USA
13457 Posts

Posted - 11/14/2005 :  22:03:20   [Permalink]  Show Profile  Visit Kil's Homepage  Send Kil an AOL message  Send Kil a Yahoo! Message Send Kil a Private Message
Derek Update 11/13/05 and news from the Road
quote:
Swoopy:
It's been far too long since anything new has been posted here, and hopefully everyone felt that "no news is good news", because that's certainly true.

However there IS plenty of news, and starting tomorrow I'll be back on the case of letting everyone know what is going on with Derek, and those who are involved in his recovery.

First and most importantly, Derek was discharged from the hospital on November 9th, two months from the day that he was admitted. He began his outpatient rehab program with Shepherd Pathways the following day, and we're very excited about what we think this program will be able to do for him.

Because it is a full day, five day a week program, he'll be a pretty busy guy, working hard on the process of retraining his brain for the fabulous, fulfilling, active, important life he has ahead of him. It's a very exciting time.

On a lighter note, it's an exciting time for Skepticality, as I am just about to leave Ontario California where I have spent the weekend at the Portable Media Expo. I have a million amazing stories to share, and even more very important memories that I will cherish forever. The power of people, is what the tagline should have been for this conference, because when humans come together, amazing things happen, and I was really proud to be apart of it, and to tell people about Derek - because his name was on everyone's lips all weekend.

So, I just stopped at a kiosk to print a boarding pass, and I couldn't refrain because I knew it had been far too long since I had posted. I spent the weekend completely unwired, and in a way it was good, but it really renewed my need to be back in the fold, doing the things that are important now. I met a bunch of Skepticality listeners! Much more about that later. Skepticality really made a mark this weekend, and it's a testament to our listeners and friends and people who I consider now to me as close as family, that you have stuck with us even though we've faded some in the past couple of months.

That time is over though.

It's a new day for Derek, and in a way I really feel like it's a new day for me too, and I can't wait for it to really start- tomorrow when I'm back at home.

More soon -

Swoopy.


Uncertainty may make you uncomfortable. Certainty makes you ridiculous.

Why not question something for a change?

Genetic Literacy Project
Go to Top of Page

Siberia
SFN Addict

Brazil
2322 Posts

Posted - 11/15/2005 :  05:31:00   [Permalink]  Show Profile  Visit Siberia's Homepage  Send Siberia an AOL message  Send Siberia a Yahoo! Message Send Siberia a Private Message
AWESOME!
Go Derek!

"Why are you afraid of something you're not even sure exists?"
- The Kovenant, Via Negativa

"People who don't like their beliefs being laughed at shouldn't have such funny beliefs."
-- unknown
Go to Top of Page

Kil
Evil Skeptic

USA
13457 Posts

Posted - 11/16/2005 :  10:14:38   [Permalink]  Show Profile  Visit Kil's Homepage  Send Kil an AOL message  Send Kil a Yahoo! Message Send Kil a Private Message
Derek Update 3:00pm 11/15/05

quote:
Swoopy:
I am NOW in the position to post again on a regular basis.

Derek has been going to oupatient rehab since Thursday. I was at the Portable Media Expo in Ontario California from very early Thursday until very early Monday. Monday morning began my new routine. I Susan and I help Derek get up, and then Susan goes to work and I make sure the man gets up, dressed, fed breakfast and has his pills. Then we're out the door all the way downtown. The commute is an hour, with good traffic, each way.

Because of this, I decided that it makes more sense once I get down there, to stay, because I would waste two hours of day driving back home and then back downtown again and the time in between is fairly short.

Thankfully there is a Borders and a Starbucks in the area, and they have outlets and wireless hotspots. So here I sit, staring at the ugliest Christmas wreath in creation on the side of Dick's sporting goods, corner of Peachtree and Wieucca in Buckhead.

But enough about that - I have no complaints, it's going to be nice to have that much time to get work done in an environment where I really can't do much else.

Welcome to what I'll call Phase 3 of Derek's Recovery.

Phase 1 - Survival
Phase 2 - In Patient Rehab
Phase 3 - Home/Outpatient Rehab

Phase 3 so far is my favorite. But it's just another new way that we're living our lives. Derek being home means that we're not at the hospital all the time, but still not home much. Shepard Pathways is an awesome place. Monday, Susan and I both went to therapy with Derek for the full day so that I could meet all of his therapists and find out what the routine there is like. Family is encouraged to participate in therapy to a degree, but part of being outpatient is working towards independence. It's easier for Derek when we're there, as we're more attuned to his needs and when his speech isn't clear, we've come to speak the language and can easily translate. That's nice for us..comfortable..for us. But it isn't moving Derek towards being forced to communicate on his own, and function on his own. This is also the only time of day now, when one of us isn't with him.

He's much better, physically, so much so, that the therapists have mostly turned his physical therapy time at Shepherd into workouts. He's been pedaling on a recumbent bike for 20 minutes, and then he does some strength training. The rest of the time, since they have evaluated him in the few days he's been there, will be mostly devoted to speech therapy, because it's his biggest need.

AND - most of the staff at Shepherd Pathways that are dealing with Derek, including his Case manager, have been checking out Skepticality. This provides them with rare insight into the speech and personality of one of their patients, which hopefully serves them as a tool that will be a big help.

Derek is still required to be supervised 24/7. While it's hard to think that it's necessary, you only have to witness him deciding that he's going to go downstairs by himself after just being told to stay where he is, to realize the extent of his short term memory issues. Yes, they are improving, but oftentimes if Derek is idle and not involved in a task, boredom gives him the tendency to wander. We've put signs on the doors of rooms leading to stairways in the house, reminding him not to go out without one of us.

This is a mild deterrent. He does really well on the stairs, but if he went up and down them frequently and at will, he's not only at risk to fall, but he'll get too tired to get up to bed by the end of the day. Constant supervision changes everything. Everything we do, includes him. And we're just thankful that it does.

Last night we went to dinner after Derek was done at Shepherd, and that was the first restaurant meal he's had since he's been out of the hospital. He was able to order, and in fact his eyes were bigger than his stomach, and ordered as he typically would, but couldn't really finish it all. Eating moderate meals, three times a day, plus all of the energy that it takes for him to continue to heal, and the physical work that he's doing and getting plenty of sleep has produced a Derek that is about 65 pounds lighter, by our estimation.

Tomorrow he has an appointment with Dr. Turkel, his cardiologist who is monitoring his blood pressure. Since insurance pays for therapy by the full day, that means that Derek gets no therapy on days when he goes to the doctor. Since we had to call four doctors for appointments following Derek's hospital discharge, I hope that doesn't mean he'll be missing therapy very often. Every day of his therapy contributes to his improvement, and it's a little more visible every day. He needs to be there, as much as possible.

We just found out that Dr. Weaver, our beloved neurologist is not "in network", so we have to investigate what we can do about that, if we can afford to pay the out of pocket expense that would be involved in having the doctor that saved Derek's life, continue to be his doctor. We feel pretty strongly that he should be, even though our other options did work on Derek's case when they were the doctor "on-call", they weren't as involved as we think is needed for his long term care.

So..I can blog now, every day When I'm home, if Derek is home - I am, where he is, for the most part. This means I'm going to urge him to spend some of that time online, which is good for him too. So if you read anything by Derek, or he shows up on Messenger, or Skype, chances are it's really him.

Thanks to everyone who was at the Portable Media Expo who approached me. I can quote the beginning of nearly every conversation I had there with friends and strangers alike, and there were a hundred I'm sure, "I'm so glad you're here! How's Derek?" And then usually, depending on the person, there were some tears. Thankful tears, mostly, for the wonderful outreach from so many people, to offer us help and comfort and concern, when we really needed it. There aren't enough hugs in the world to thank everyone.

So, that's it for today from Borders at Buckhead Triangle. I may have to start using the portable equipment and podcasting from here every day I could take informal polls of people I see standing in the Science section.

- Swoopy


Uncertainty may make you uncomfortable. Certainty makes you ridiculous.

Why not question something for a change?

Genetic Literacy Project
Go to Top of Page

Kil
Evil Skeptic

USA
13457 Posts

Posted - 11/20/2005 :  20:31:47   [Permalink]  Show Profile  Visit Kil's Homepage  Send Kil an AOL message  Send Kil a Yahoo! Message Send Kil a Private Message
Derek Update 6:00pm 11/20/05

quote:
Swoopy:

The week just flew by!

We've developed a good schedule, where Derek gets up around seven, goes down and has breakfast, gets dressed and we're out the door on our way to Pathways by 7:45. Sounds simple I guess. What it really means is, I wake him up, help him downstairs, make him breakfast, make his lunch while he eats it. Afterwards, help him down to the bottom floor, assist him through brushing teeth, washing up and all that stuff. Help him dress, make sure we have everything and then we head on out to the car. Somewhere in there, I find time to get ready too. Susan has usually just left when we're getting up, so everyone's day is starting earlier than before. Derek gets up pretty well, probably better than I do, so I can't complain.

Traffic is fun. I like commuting. This is my new mantra.

Since Traffic is so much fun, and it takes an hour to get to Pathways and it would take another hour to go home, and then another hour to come back, and then another hour home - whew - I decided that it saves time, and gas and frustration for me to just hang out downtown while Derek is at Shepherd. I've found some places with wi-fi (t-mobile hot spots) and I try (and will be trying harder) to get work done, or I can go to a nearby grocery store or Target and get errands done and all that stuff. I head back to Pathways and we leave there around four and get home around the same time as Susan, if we're lucky. And then it's dinner and then it's winding down time, and then the day is just gone, and we're all sleepy.

The first few days at Pathways, Susan was there and Monday we both went and spent the whole day. While it's tempting to want to be there and to participate, our not being there is also helping him foster a sense of independence and allows the therapists to really see how he responds without the coaching or distraction of others. And this is all really good for him. There is always a twinge of anxiety in the morning about if he'll be okay all day, and of course he is. He doesn't have any resistance to going, or being there without us either, so there is nothing to feel guilty about. Still, it's always good to see him at the end of the day to be assured that everything was okay.

Derek has been doing all sorts of new things to challenge him at Shepherd, and the results are already showing. His physical therapy is more of a work out now, as he spends twenty minutes on a recumbent bike and does resistance excersizes to build his endurance. Physically he's doing great.

Cognitively, he's also making great strides. One of the biggest differences in him right now, from the Derek that everyone knows and loves is in what therapists refer to as initiative. He responds very well to requests and questions, and is content to do almost anything. He goes with the flow, in a way that he's never really done before. This is because the desire to want to do any particular thing, and this includes what he wants to eat also to a degree, isn't very present yet. It is, like everything, improving but as for having an urge to go and do something, read something, watch something, be somewhere, that just isn't a factor in our day to day.

This means he's not spending time in front of the computer, or watching television or reading or playing games, unless we suggest it. So we do our best to keep him actively doing something during his unscheduled time. We play games, lots of card games and memory games and word games, and we talk about various things and watch television shows that he likes.

On the language front, a lot of the rest of his therapy has been redirected to working on his speech as it is the main thing he really needs. His therapists are targeting his apraxia and a lot of the things they are doing to help him distinguish when his words are not the ones he means to say, and how to read more slowly and sound out what isn't coming out right. This gets better nearly every day. He does get frustrated at himself that he can't just say what he wants whenever he wants. You know Derek, talking is his favorite thing, but that he works through it and his spirits are still high is a testament to just how much more patient he seems to be these days. This is part of that initiation response that is slowly returning, but that keeps him from wanting to flit from one project to the next. So in speech, this newfound resolve is a benefit.

His handwriting is just about as good as it ever was (being a lefty) and he reads very well also. His reading comprehension has been tested, and showed that it's quite good and will improve as his short term memory does. This too, is getting better. Part of the day is quizzing him on what we've already done that day, what we did earlier in the week, plans we have made for the immediate future and even what we just did a few minutes ago. This is something that is better when he's more awake or if it's earlier in the day, but his stamina too is increasing and he can stay up fairly late and still have enough energy to climb stairs in the house or carry on active conversation. This is a big improvement from a few weeks ago when he was very hard to keep awake, and his speech would deteriorate quite a lot after dinnertime.

The hardest thing for me to keep in perspective these days..is time. Today is November 20th. Derek went into the hospital on September 8th. 72 days later... It feels like a year. In terms of time, from near death, to some consciousness in bed, to in patient rehab on oxygen and not walking or talking, to walking and talking out of the Hospital on November 9th - to being able to function at home and go to dinner at a restaurant for a fairly normal dinner - is astounding. Yay science. Yay human perseverance. Yay him, yay us. Yay everyone.

So this week, even though this is a holiday I'm not usually into, I'm going to be thankful for the power of human potential and for everything that we've learned this year, and for our strength and patience and the love and support of family and friends near and far that allowed us to survive this and dare I say, eventually to even thrive in spite of this.

Happy Thanksgiving.

- Swoopy


Uncertainty may make you uncomfortable. Certainty makes you ridiculous.

Why not question something for a change?

Genetic Literacy Project
Go to Top of Page
Page: of 5 Previous Topic Topic Next Topic  
Previous Page | Next Page
 New Topic  Topic Locked
 Printer Friendly Bookmark this Topic BookMark Topic
Jump To:

The mission of the Skeptic Friends Network is to promote skepticism, critical thinking, science and logic as the best methods for evaluating all claims of fact, and we invite active participation by our members to create a skeptical community with a wide variety of viewpoints and expertise.


Home | Skeptic Forums | Skeptic Summary | The Kil Report | Creation/Evolution | Rationally Speaking | Skeptillaneous | About Skepticism | Fan Mail | Claims List | Calendar & Events | Skeptic Links | Book Reviews | Gift Shop | SFN on Facebook | Staff | Contact Us

Skeptic Friends Network
© 2008 Skeptic Friends Network Go To Top Of Page
This page was generated in 0.7 seconds.
Powered by @tomic Studio
Snitz Forums 2000