Monday, December 27, 2010

Well I've survived yet another holiday season, as I hope all of you did too. I had a wonderful Thanksgiving with the entire family, from Massachusetts to New Mexico, and a rather calm Christmas. With all the excitement I lost track of updating the blog. My health has been well through this cold December where having. My shoulder has calmed finally, I've hardly had any pain in the past two weeks.Filling the propane tank reminds me of why I heated with wood in the first place. Though I've been staying warm, it's costing me a small fortune. And has encouraged me to better insulate my house. My cats, Dewey and Sebastian, finally came in out of the cold, Sebastian has taken over the house again. Shilah is over 30 pounds and heat at seven months old, off to the vet we go.

Tuesday, November 23

Hello everyone, another busy few weeks have gone by again. Though many attempts have been made to the hunting all have been met with failure. I finally got a site system worked out on the cross bow, I've put a pistol scope on the bow, and with its long eye relief I am able to use it in the gun mount if it is attached to my chair. Bad weather prevented me from hunting up until about a week and a half ago when some medical issues started occurring. The first was a really bad UTI that took two weeks in two different antibiotics to get rid of, only now it has cleared up. Last Saturday morning I woke up and could not catch my breath, we ended up calling 911 and going to the emergency room. Turns out I had a small patch of pneumonia in my right lung. They admitted me to the hospital for an overnight observation and so they could give me IV antibiotics. I feel great now and am on an oral antibiotic to make sure the pneumonia has cleared up. I'm going to give it a few days rest and then attempt to hunt after Thanksgiving, the dream is still alive.
Things around the house have been relatively normal. The finish my furnace installation, and now I'm not cold all the time. My dog Shilah has gotten big, she now weighs about 25 pounds. She's learning her name but not very quickly, she knows right from wrong but still tries to get away with anything she can to. You've got to love puppies.
The whole family is coming in this Thanksgiving. It will be nice to see them all at one time.

Monday, November 8

Well the past few weeks my father and I have been faced with the daunting task of getting me back in the woods for this year's Whitetail rut. Today I was able to spend some time in the woods for the first time in almost a year. Even though I was not hunting, we were making a trial run with all equipment for me to hunt. Even though some alterations are needed the trip turned out to be a success. I'm in one piece and still alive. Included is a photo of me and my hunting rig and my father's chair.

Wednesday, October 13

Well I survived my first two day outing this past weekend. I went to Columbus to a PBR rodeo with my friends Jim and Dave from Massachusetts. Though I'm not much of rodeo fan, I had a good time. I didn't get much sleep Saturday night due to my congestion and a little bit of a spell of dysreflexia following day, neither event are going to stop me from traveling again. All in all a good first trip. While Jim and Dave were in this time they bought me and brought to me a crossbow to use this fall while deer hunting. One step closer to being in the woods, a second step closer will be perfected very shortly. My father has relentlessly been converting my four-wheel-drive chair into something I can use, and the conversion is about finished. It is already in a usable state though I still have trouble with right turns, but that's not the chair's fault. Pictures of this chair will follow soon. And Kimberly, if you're still reading, I would be very interested in hunting out there next fall my e-mail is a.william.beck AT gmail DOT com.

Sunday, September 19, 2010

Hello everyone, and again sorry for the delay in my posting. It's been kind of a busy month for me this month. I've had family in for most of the month, my cousins stayed for almost a month and my sister came in for my birthday. I had lost my appetite followed by trach infection, both of which contributed to much weight loss. I'm doing a lot better and eating again and all in all feel great. Fall is my time of year, the autumn leaves the cooler nights. And especially the hunting seasons, archery season for deer starts in six days. Though I have yet to get a crossbow, I did receive my four-wheel-drive wheelchair this week. And love it, it lets me get off my porch and back into the woods. It needs some modifications to the seat before I can really use it, but it looks like it won't be much.
I've used the ventilator once in the past six weeks, so one more thing checkoff my list.

Tuesday, August 24th

When I left the Shepherd Center, they told me it would be a least a year before I could get off the ventilator. Well it took only five months, and as of this morning I've been off for 10 days now. I've spent the prior 45 days getting ready for this by going off of the ventilator for 16 hours a day and being only suctioned a number of time. My respiratory therapist told me if I felt like I was ready to go ahead and give it a try. It is a milestone for me because now no longer do I have to hide the sound of the ventilator when I go hunting this fall and that means a lot to me, hee hee. Due to my cold nature I'm going to have to hunt hard during the early months of the season this fall. I had some pretty severe shoulder pain the last few weeks, even went as far as getting a steroid shot. When my doctor told me about the shot he also said if the pain went away it was an overstretched muscle. If it did not go away it was something more serious. And lucky me, it did not go away. So I have another appointment on Thursday and I'll get my shoulder looked at again. And yet again another UTI, more antibiotics. On a brighter note, I have included photo's of my new wheelchair. It's a four-wheel-drive off-road wheelchair, that I am hoping will take me hunting this fall.I have yet to receive it or the other chair I bought off eBay. It is just like the one I have, it will be used as a donor chair for the off-road chair. I need the chair off of it for its tilting capabilities.

Thursday,July 2 9

Hello again everyone, it may seem as though I've fallen off the face of the earth. And in ways I have, and it's quiet out here, but I love it. I've gone 36 days off of the ventilator for more than 16 hours and 35 days without being suctioned. The doctor even said it sounded like I was moving more air, so I'm hoping that this means my diaphragm is returning. I've talked to the doctor and he has agreed to let me try to go off the ventilator for a night with blood gas test before and after. He has also agreed to schedule a moving x-ray of my chest, to determine if my diaphragm is working. On the good side I was approved for 16 hours a day of nursing care, which started this past Monday, which gives dad and Larry sometime off. It's going very well and it's comforting to know that somebody is always awake. The puppy is almost twice as big as she was, she can now bark much to my excitement. She is hard to watch at all times, she's very sneaky. For another three weeks take care everyone, and no news is good news.

Saturday, July 10

Well it's been over a month home and I feel great. This is the 12 day off of the vent for the least 16 hours or more. And the seventh day I have not needed suctioned. It's early to say but I might have this thing beat. I have a weak cough, but right now it's enough to cough up any junk. Therapy is going great, my wrist extension are getting stronger. My sister told me to wait at least a month till I got in the groove of daily life before I got a new dog. So on July 4 I got a basset and named her shilah. She's a cute little dog with not much energy, perfect. The only problem is I can't feel when she's chewing on my fingers and toes. No blood yet, but hopefully it's just a phase she's going through.

Sunday, June 27

I've been home 27 days and it feels great. I finally gave in and got my hair cut, much cooler in the hot days in the Whipple valley. I've been going to therapy three days a week and now my shoulders hurt, no pain no gain. I learned one thing after seven months my wrist extensions have returned. That is the ability to give a motorcycle gas, I can lift my wrist off the table. The doctors in Atlanta told me that this would happen within the year, and they were right. It's such a good feeling to have something come back, though it's only small, it's a step. My occupational therapist showed me that I could brush my teeth, so guess who has to brush his own teeth now. As for vent weaning I'm up to all day (14 -- 16 hours) off the vent and it feels great, a bit tired at the end of the day, but it makes me sleep well.

Thursday, June 2

Hello everyone, I finally made it, home sweet home. There's nothing like the morning dew, or the way the Foxfire dances in the trees as the morning sun burns it off in the Whipple Holler. After spending two nights here, I'm already much better. The essence of solitude these days have brought me are well-earned. Yet, many more will come. As a welcome home gift I bought myself a gun mount for my wheelchair, included is a picture of such an item. It's got a joystick and a sip trigger, which allow me to use it by aiming and fire it. It will allow me to deer hunt this year and maybe I'll get that 12 point I was chasing at the beginning of last season. But I don't really care what I get I'm going to get it mounted, as my recovery deer. Next week though will be full of doctors appointments and rehab, not much relaxation there.and you will

Sunday, May 30

From the beginning I said I wanted to enjoy the first day in June on my porch, but I was hoping to get home a bit sooner, and with my discharge date of June 1 I met my goal. With little more than a day left at arbors, I must look back to a little less than a day after the accident. And the fact that I was still alive was amazing, through I wasn't looking good. Every time they touched me, I would braiby cardiar (my heart would slow down and stop), now I don't even wake up when they turn me at night. I have come a long way in six months, and can't imagine where I'll be in six more.I forgot to include my friend Ben as one of the primary workers on my house in the past few months. And again I thank everyone who has put any effort into my recovery, you've been great.

Hello everyone, another delayed post, sorry about that been kind of busy. I've been working on vent weaning, up to 11 hours off the vent more than half of that capped. Which means a small red cap over my trach, which allows me to breathe through my nose. And for the first time in six months I can smell myself, and man do I stink. I want to thank those who have been working on my house and those being; my father, Dan and Diane Zimmerman, Larry Moss, and anyone else who has volunteered their time and the efforts to get my house completed by Tuesday, inspection day. And if all fares well in the inspection, I will get to go home on Friday the 28th. I've been home twice now, and it looks great and the quietness is even better. And I thank Dave Farr for flying to Albuquerque and bringing my van back safely, now I can leave the arbors and get out and get some air. Thanks everyone at AEP Muskingum River plant for the support you have been through these tough times. Photos of the house will be coming soon once it's complete. Thank you.

I'm including a picture of my new van, and a picture of my new set of wheels.

Friday, April 23

Hello everyone, I know I haven't been keeping the blog as up to date as my sister did, but I'll try harder. Today they put my driveway in, last week they drywalled in the living room. Tomorrow they will frame up my new bathroom and stomp the living room ceiling. A week ago today I got my permanent wheelchair, and am becoming much stronger at driving it. Also I'm weaning from the ventilator, today I went six hours off the ventilator. I have gained weight, as now I'm 141 pounds, almost to my before accident weight. After a long hard search we have finally purchased a van, only drawback is that it is in California.

April 5: Marietta Times Article

Path of recuperation: Whipple man in good spirits after paralyzing accident

By Sam Shawver

A year ago Whipple resident Bill Beck would no doubt have been fishing or planning for a whitewater rafting trip in the mountains of West Virginia.

"I like to hunt, fish, boat, kayak - if I wasn't at work I was always doing something outdoors," Bill, 28, said, adding that he bagged three deer while bow hunting last year.

In addition to his outdoors activities, Bill worked for American Electric Power in Beverly and was commuting to Ohio University in Athens to work on a mechanical engineering degree.

But his life radically changed on Nov. 16, 2009.

Around noon that day Bill was cutting down a tree less than a mile from his home on the family farm near Whipple. A limb fell, striking Beck on the head, injuring the spine at the base of his neck.

"He missed being crushed by only a few inches," said Bill's sister, Sarah.

"Originally he was going to cut down the tree by himself, but a buddy, Chris Perot, happened to show up and asked to go with him," Sarah added. "There's no question in my mind that Bill would have died if Chris had not been there."

Bill agreed.

"I was kind of perturbed at first when he said he wanted to come along and watch, but I would have died if not for Chris," he said.

Bill was knocked unconscious by the blow. Perot first made sure his friend was still breathing, then ran to the nearby house of Bill's parents, Stephen and Nancy Beck.

Nancy called Stephen at work and he in turn called 911, then he rushed home.

At the scene, rescue workers determined that, considering his injuries, it would be too risky to transport Bill to an area hospital, so he was flown to Ruby Memorial Hospital in Morgantown, W.Va., which was the nearest head trauma facility.

Later he was moved to Shepherd Center in Atlanta, Ga., one of the nation's top facilities for treatment of patients with spinal cord injuries.

"He's now classified as a C-5 quadraplegic," Sarah said. "His spinal cord was crushed between vertebrae 5 and 6 at the base of his neck."

Bill, now back in Marietta continuing his recovery and rehabilitation at the Arbors nursing facility, said Sarah, who lives in New Mexico, had traveled to Morgantown and Atlanta, and remained by his side for most of the next four months until he recently returned to Washington County.

He said the last thing he remembered of the accident was the tree limb snapping. Bill recalled waking up in the hospital about two weeks later and lifting his right arm, but his hand just dangled from the wrist.

"I had to ask my Dad what happened to me," Bill said.

He later learned that the limb had pushed his head forward and pinched the spinal cord, leaving him with limited mobility from the neck down.

"But it's not over for him," Sarah said. "He's not taking this lying down."

In his room at the Arbors, Bill uses a computer that responds to his vocal commands to do everything from e-mailing and phoning friends and family to shopping for a van he'll need for transport when he returns home.

He's also discovered beadaptive.com, a Web site connecting him with others experiencing similar physical limitations who have formed a support network to help and encourage one another.

"They sponsor someone every year to go on a hunt, and I've submitted an application form to go," Bill said.

"The computer was a breakthrough, it's helped turn him around and motivates him," Stephen Beck said of his son.

He said Bill also plans to finish his schooling as soon as possible.

Stephen said a group of Bill's friends and other volunteers are also currently working to make Bill's house more accessible.

"He grew up in that house," Stephen said. "A group of volunteers and quite a few friends from his work are working on it.

"The exterior work is mostly done, and we're getting started on the interior now," he said.

The project will include remodeling of the bathroom and installation of new windows.

Meanwhile Bill continues to maintain a positive attitude about the whole situation.

Asked if he thinks about the accident much, he said "no."

"You really can't cry over spilt milk," Bill said. "If I worry or get upset, it will just take me down, and I want to carry on with my life. There are some things I can't do now, but I also have a whole new set of opportunities."

 

Thursday, April 1

Hello everyone,I'm doing good here at the Arbor's. I'm getting over a case of pneumonia and a UTI. I've started to vent ween again, hopefully with better results this time. I want to thank everyone who worked on my house thus far, and thank anyone who works on it in the future. I have included a picture of the house with the finished concrete pad for my front porch. I think it will be awesome. And thanks for all the visitors.

Saturday, March 20

My house before concrete as being poured.

Saturday, March 20

Hello everyone, I greatly appreciate everyone who's visited, and those who have worked on my house. I am off of quarantine and welcome any more visitors. They're going to try and wean me from the vent again. Hopefully no pneumonia will happen this time. I'm waiting on my wheelchair to arrive later this week and finally get outside in some of this good weather. I'll try to update the blog more often.

Tuesday, March 16

Hello everyone, I'm here at the arbors and doing well. I've got some bug so they have me on quarantine. That doesn't mean you can come visit, I welcome all visitors. They are planning to start that waning soon. They tried but there are some complications. Half of my diaphragm is paralyzed, which means I'm running on one lung, this doesn't mean I can be weaned from the vent. It will just take some time.

Monday, March 15

I suspect that most of you reading this blog have already had a chance to get in and see Bill, but for those of you farther afield I wanted to share a brief update.

Bill is at the Arbors, a nursing home in Marietta.  He will be there for a few months while his home is renovated as well as while he gets a bit stronger and more medically stable.  It's taking some adjustment but I know that he loves being close to all of his friends and your visits mean a great deal to him.

He has been diagnosed with MRSA (methicillin-resistant Staphylococcus aureus) which is a bacterial infection that is resistant to a large group of antibiotics.  There is a course of treatment for MRSA and it has been started on Bill.  From what I understand, people who spend a lot of time in hospitals inevitably catch this bug.  It can be dangerous but it can also be managed and treated.  It means that he is in isolation at the Arbors; he can have visitors but they need to wear a gown, mask, and gloves.  I spoke to him briefly this afternoon and he sounded a bit worn-down and disappointed.  Who can blame him?

We also learned last week that the left side of Bill's diaphragm is paralyzed and probably has been all along.  The diaphragm is enervated at C3, 4, and 5.  The initial MRI he had showed damage to his spinal cord all the way up to C2 and I guess this is evidence of that.  His pulmonary specialist at the Shepherd Center recommended that he wait a year to see if any of that nerve function returns.  If it does not and he's still on a ventilator, he can get what is called a diaphragmatic pacemaker.  This explains a lot of his respiratory troubles: he's only running on one lung.  He can still get off the ventilator this way, but it's going to take some very hard work on his part.

Back in Marietta!

I just spoke with Dad and Bill is settled into his room at The Arbors in Marietta.  His is on the 2nd floor in room D4 and it sounds like he is ready for visitors.

Saturday, March 6

Hello everyone this is Bill. Finishing up here at Shepherd Center. I should be returning to the arbors of Marietta on Wednesday the 10th. Looking forward to being back and Marietta. I look forward to seeing my friends and family more often. I had a great visit with my cat and hoped to do it again. I will let you know what room and visiting hours are. So keep checking the blogfor another update.

Wednesday, February 24

hello everyone it's me Bill. Things are going great here in Atlanta. My friend Larry brought my cat down to see me and he's great. Rehab is getting tough but it's for the better. My parents will be coming down on March 2. Sarah will be going back to Albuquerque shortly thereafter. Yesterday we went Ted's Montana Grill, I had a bison tenderloin steak, it was great.

Wednesday, February 17

I was really hoping to turn this whole shebang over to Bill and let him tell you how things are going, but he's so busy responding to all of your email that he doesn't have time to update the blog.  Go figure.  Anyway, there are a couple of items worth reporting so I'll fill you all in.  First of all, Bill's discharge date has been moved back to March 10 (insurance company willing and all of that).  This buys him a week and a half more of intense inpatient rehab and hopefully will get him that much closer to getting off the ventilator.  He's pretty excited about this and although he wants to be home, he wants to be off the ventilator just a little bit more.  The other newsworthy item is that yesterday Bill was able to feed himself part of his lunch!  With the use of adaptive equipment, he was able to get 8 bites from the plate to his palate by himself and this is truly great news! 

it's me Bill

Hello everyone thanks for the support. Rehab is going great. I'm getting stronger and hope to get much stronger. I have four hours of rehab each day and classes, and I'm usually very tired at the end of each day. I hope to have my time here extended past February. To obtain more rehab and get much stronger. I should be going home after that. Thank you for the cards and the phone calls keep them coming. If I haven't talked to you on the phone I will when I get home. Thank you.

Saturday, February 13

What a huge difference a week makes!  Mike and I rolled back in to Atlanta today and I am amazed at Bill's progress in the time I've been away.  Last week went fairly well for him although there was some disappointing news about vent weaning.  His discharge date is February 26 * but this was set before the respiratory issues started snowballing in January.  It's possible that his discharge date will be pushed back, but the folks in charge have not done this yet.  During the week, the respiratory specialist told Bill that he will not be off the ventilator by February 26.  Therefore, at this point Bill is expected to go home on the ventilator.  I'm sure everyone can imagine how hard this was for Bill to hear.  From what I understand, the issue is that his lungs are incredibly weak because of everything he has been through.  This doesn't mean he will always be on the vent, but this big piece of his recovery is pushed back and that's really tough.  It is possible that if he stays in the inpatient program a few more weeks he could get off the vent.  Extending his stay depends on whether or not he continues to make improvement and the Shepherd Center can justify keeping him here.  When I talked about this with him tonight he said that he wants to stay and show them all he can do it.  Although he wants to get home, at this point he would rather stay a bit longer in order to go home vent-free and stronger.

Even with the disappointing news about the vent I can still see a huge improvement in Bill.  His arms are both stronger and he has more coordination than he did a week ago.  Still no sign of hand function returning, but the future is vast and you just never know what it holds.  Best of all, his attitude is great and he was joking with us all evening.

Bill is also using Dragon Naturally Speaking with the laptop AEP gave him.   This is a voice-recognition program that allows him to use a computer with no hands.  In addition to being speech therapy disguised as fun (he has to speak loudly and clearly to get the software to work!) it allows him to respond to email on his own and stay in touch will all of you.  So, please send him email!  a.william.beckATgmailDOTcom.  Joy Schumacher- could you drop him an email?

*Although Bill is expected to be discharged from inpatient rehab on the 26th, the plan was for him to do 2-6 weeks of the outpatient "Day Program" here at the Shepherd Center.  The exact length of time he spends in the Program depends on his needs and what his insurance company will cover.  This is sort of a transition home: during the day he would go in for therapy and at the end of the day he would return to an apartment and we would provide most of his care.

Thursday, February 11

Bill has had a pretty good week so far.  He was bumped up to official rehab status last week and his schedule definitely reflects that!  He has been spending 10+ hours in his chair each day and continues to work on cuff deflation.  I have actually been in New Mexico this week but Dad and Nancy are in Atlanta and they tell me that Bill is doing well and working very hard.  It looks like he has moved past the respiratory complications of the first couple months and that is such a relief.

Friday, February 5

Bill has had another great week.  He was officially moved up to full rehab status and his therapists have been pushing him hard to regain strength and function.  He is also still working on ventilator weaning, although they are taking it very slowly.  I may not have described this well before, but he has not actually worked up to spending time off the vent here.  Because of the issues with anxiety he had in Morgantown, and then all the other lung complications, they are not pushing him very hard at all.  He is just not up for it yet.  Ventilator weaning for now means gradually easing back the settings and working with him to get used to having air leaking around his cuff.  These sorts of changes still lead to anxiety and anxiety is counterproductive when trying to breathe.  His doctors are working on changing his medication and other techniques to help him deal with it, but until it's under control unhooking the vent from him would do more harm than good.  It's tough to watch him struggle with this, but there is not a thing anyone else can do except tell him it will be ok.  This is his battle and he will fight it in his own time.

Thanks to everyone for finding links to accessible ATVs.  For those of you who don't know Bill, not a day has gone by in his life when he hasn't been outdoors and exploring.  I don't think I am exaggerating when I say that.  Our family has a 200-acre piece of land in southern Ohio that is mostly wooded hillsides with a few fields.  Bill has always had a remarkable connection with the land and the plants and animals on it.  Finding a way to allow him to get outside and be in the trees is an essential part of his quality of life and we appreciate the help finding out how to do this.

Finally, there seems to be some confusion regarding visiting Bill here in Atlanta.  Visitors are welcome and in fact pretty important.  The stipulation is that visiting hours are from 4-9 pm during the week and all day on the weekends to allow patients to focus on therapy because that's why they are here.  This is not my rule, this is the Shepherd Center's rule.  Family members are more present during the day because they have other roles and obligations.  I ask that folks let me know when they want to come so that we can try to spread visits out so that we don't have a situation where everyone shows up at once and then the next weekend no one comes.  I am not discouraging anyone from coming.  Bill is really looking forward to seeing his friends.

Sunday, January 31

I just wanted to post this picture of Bill doing therapy on his day off!  To be fair though I made a deal that if he did some therapy, I would cook him dinner and bring it in for him.  Here he is using a mobile arm support.  This device allows him to move his arm without the normal resistance from gravity (the red and blue rubber bands are the mechanism here).  While his arm is in the mobile arm support he can move it both towards and away from his body in a horizontal plane as well us up and down in a vertical plane.  At this point, he can't do that much on his own.  As he gains more strength the rubber bands will be removed and he will have to work harder, which will in turn lead to gaining more strength.  Pretty cool.

Friday, January 29

This week was better than any of us could have imagined.  It seems like Bill really has turned that proverbial corner and was motivated, agreeable, and downright jovial this week.  After a bit of a showdown with his nurse on Monday regarding what time he should get up in the morning (anyone who knows Bill will surely agree that this is completely within character for him) something clicked and he stopped struggling against every single little thing.  I would hold my breath every morning this week, afraid that the pattern had finally broken, but it never did.

He continues to work on the anxiety and on Wednesday he met a therapy dog.  The dog happened to show up just as a procedure with his trach was being started.  The speech and respiratory therapists will deflate the air in the cuff that holds his trach in place so that when he exhales the air goes up past his vocal cords (rather than out through the hole in his throat) and he can talk.  For some reason, deflating his cuff has led to massive panic attacks the past week or so but he was so transfixed by the dog that he didn't panic at all.  I was not actually around when this happened, but I have been instructed by Bill to be there next week and meet the dog for myself.  I've seen this dog in the halls of the Shepherd Center and can say without a doubt that she is the most obese Rottweiler I've ever seen.  I heard she crawled into Bill's lap and stole his heart. 

I know that there will be other setbacks and bumps in the road, but it has been so great to have experienced this week.  For once things seemed to go better than expected and I hope Bill realizes that, too.

Request for Information

Does anyone have some spare internet surfing time?  Bill is asking me to do some research on modifying ATVs (specifically a side-by-side model like the Polaris Ranger) so that he can drive it himself.  I am having trouble finding time to do this and wonder if anyone else would like to take a look.  Leave a comment with links to anything you think might be interesting, pictures are particularly great.  We've seen the You Tube video of Alan transferring to his ATV and Bill is interested and mildly encouraged.  Alan is a C6-7 quad so he has a few more muscles (namely triceps) than Bill does at this point, so it might not be quite as easy for Bill.  However, we have no idea how much might come back and I think it's good for him to be thinking about this stuff.

Thanks!

Tuesday, January 26

It's only Tuesday but Bill has had a big week so far.  When I came in this morning Bill wanted to know what the temperature outside was and how warm it was supposed to get today.  I was a bit puzzled by these questions, but then he told me that his nurse (with whom he has been clashing with over any and everything the last few days) suggested Bill go outside for a bit before lunch if it was warm enough.  He was looking forward to this prospect although it may not be that obvious in the photo.  One of the things going on with Bill is that his affect (or the way he displays emotion) does not always match the emotions he says he has.  His facial expressions display his anger and fear, but the positive moods don't always work that way.  He will flash a smile now and then, but it's very fast and sometimes it seems more forced than genuine.  No one is sure if this is because of the brain injury, the fact that he went from physically active to quadriplegic in a matter of moments, or if it's because he's on a lot of medication.  Sorry for the digression there, this just seemed like a good place to describe some of that.

Anyway, yesterday he spent seven (grudging) hours in the chair, left his room twice, went to a group therapy session, and successfully worked himself down from an anxiety attack without medication!  Last night the chest tubes were removed (click here for a somewhat graphic photo of the chest tubes in place) and I heard that the PICC line (the IV line in his right arm) may be removed in the next few days.  It's very exciting to see so much of the medical hardware being removed.  After it comes out we are left with just the stomach feeding tube (which he no longer receives nutrition through, just extra medications) and the trach...

Which brings us finally to ventilator weaning.  I believe it has started.  Today the respiratory therapist tried to tweak back some of the settings without telling Bill and I don't believe that was working out well.  It will be interesting to see what, if any, agreement they come to.  Bill absolutely wants to get off the ventilator, but his anxiety is a real concern and when it gets out of control, he can't breathe very well.  And if he can't breathe very well, he gets more anxious.  I'm not sure what the best approach will be and I suspect that it will vary each day.

UPDATED: Another seven hours in the chair, another anxiety attack thwarted without medication, PICC line removed. 

Friday, January 22

Many of you have noticed that these posts are getting briefer and more intermittent.  There are a couple of reasons for this.  The respiratory issues have slowed things down quite a bit so there aren't a lot of big events to report.  I'm also exhausted at the end of the day (who knew rehab would wear the family out, too!) and recording events here falls by the wayside.  Finally, as I'm sure you can imagine, this whole experience is rough and I'm reluctant to share all of the details in such a public place.  Those are the reasons I've abandoned posting every day.

On to other things!  The week finished up pretty well.  Bill's occupational therapist has been working with him using assistive equipment to do things like eat, turn magazine pages, and type on a keyboard.  It's difficult and frustrating for him to have to retrain his body to do things that used to come so easily.  His physical therapist continues to work with him on strengthening the muscles that are still enervated in his arms and he's making great improvement there.  He is healing up nicely from the lung surgery he had Monday and we hope that the chest tubes will come out early next week.

There have also been a couple visitors this week who have been in a similar position that Bill is currently in.  They can relate to him in a way that none of the rest of us can, and they are also clear examples that he can have a life after spinal cord injury.  It's tough to know when someone might be ready to have those discussions and meet other disabled people, but I think this is happening at the right time.  Bill is still confined to his room because of the chest tubes and the suction device they are hooked up to, so he doesn't see many people and the folks he does see are not disabled.  I find the Shepherd Center to be a very inspiring place because there are so many people who are going about their daily lives, either working there, coming in for therapy, or just coming in to use the gyms.  It feels strange to call them disabled because they are clearly able- they just get around in wheelchairs instead of walking like I do.

Monday, January 18

Bill's surgery went very well today.  It turns out that the surgery he had was similar to the procedure I  linked to (steps 4, 5, and 6) a few days ago along with the pleurodesis procedure I described on Thursday.  If the pain meds they gave him today are any indication, the whole thing was just as brutal as it sounds.  He did very well and the surgery went off without any problems.  Even better news is that he was able to control his anxiety the whole time.  That alone is exciting stuff!  I hope I'm not getting my hopes too high, but I really think we are turning a corner.  His spirits have been so much better since Dad and Nancy were here for a visit; although, maybe his spirits are better because I was gone for a week...  Either way, he is so much stronger and more motivated than he was a few weeks ago.  He told me today he was looking forward to getting in the gym, working hard, and getting off the ventilator.  I know there will be many more rough patches ahead, but for now it's nice to hear him say things like that and see a genuine smile on his face.  I hope this lasts for awhile...

Thursday, January 14

Bill's right lung is still not great and he is scheduled to have surgery on Monday morning to correct it.  He's having a procedure known as a pleurodesis done.  If you refer to the picture in yesterday's post of the lungs, you can kind of see that there are two membranes surrounding the lung; the visceral membrane is closest to the lung and the parietal membrane is on the outside.  A pneumothorax occurs when air escapes and gets trapped between the two membranes.  A pleurodesis is the process by which those two membranes are stuck to one another by producing scar tissue.  This can either be done chemically or by physically irritating the membranes.  I think Bill's membranes will be physically irritated.  It sounds terrible, however if it means that his lung will no longer spontaneously collapse then I'm all for it.

Today was the medical conference with Bill, the family, and the doctors on his team.  This is the meeting we've been waiting for to find out more about his injury and what the big picture of his recovery will entail.  We did not learn anything new in the meeting, but it was still sobering to have the bits and pieces we've picked up confirmed.

Bill's injury is just as severe as we have been led to believe.  He is a C5 quadriplegic and this means that the last normally functioning area of his spinal cord is at cervical vertebra 5.  He has extensive damage at C6 and then everything is fine below that.  That's the kicker with spinal cord injury: it only takes one bad area to leave you disabled.  Currently there is no way to fix or bridge the bad area, although there is much research ongoing.

The American Spinal Injury Association has developed an impairment scale which is the standard used to assess the extent of spinal cord injury.  If you like, you can read an excellent description of spinal cord injury and the ASIA Impairment Scale here.  (Thanks for the link, Edie!)  Bill is currently classified as ASIA A.  This means that his doctors can't reliably measure sensation or motor function below the point of injury.  The key word here is reliably.  Bill may or may not have any sensation, I know that at times he has said he can feel touch on his feet or legs but it's usually when he can see someone actually touching him.  I think his brain may be playing tricks on him.  The ASIA Impairment Scale is not a perfect tool, it just happens to be the best one at the moment.  It also only measures what his current impairment is and makes absolutely no predictions about the future.  So, it's a bummer that he's at the far end of the scale, but it could change with time.   

With his level of injury he will have some use of his arms (biceps but not triceps) and hopefully in a year his wrist flexors (imagine the motion your wrist makes when you turn the throttle on a motorcycle).  His doctor told us that there is a less than 1% chance of him regaining the use of his hands.

With his level of injury he should be able to get off the ventilator, however with the current lung complications and his anxiety this may take some time.

The brain injury will likely heal itself with time.

To sum up our meeting, Bill's doctor considers a good outcome one year from now to be breathing on his own and wrist extensor function so that he can feed and groom himself.  He probably won't ever be independent because without triceps he will have little ability to transfer his own body from bed to wheelchair (if there were a fire, for example) and without finger dexterity he won't be able to perform detailed tasks.  He also does not have any control of his trunk muscles and will therefore not have good balance, so he could easily fall from his chair and not be able to get back in it by himself.

We did not learn anything new here today and I guess I've been reluctant to share all this sooner because I was hoping it wasn't true.  I am reminded again this evening of how lucky we, Bill included, are that it was not worse.  The spinal cord injury could have been higher and left him with no use of his arms and no ability to breathe on his own.  The brain injury could have been worse and left him a shell of the person he was before.  This is where we are now and we will all move forward.  At times I find the future overwhelming to consider, but I know that things will work out one way or another.  The one constant that I hear over and over again is that every person heals differently and some people recover more function than ever expected for no apparent reason.  Only time will tell.

Tuesday, January 12

The last couple days have gone fairly quietly for Bill.  His right lung is either holding steady or perhaps getting a little worse, depending on which doctor you ask.  It sounds like there are plans to surgically correct this and I will describe that in more detail when I learn more.  Just to give you some idea though, I've copied in a diagram lifted from the National Library of Medicine's website that shows a pneumothorax.

Now, the surgical procedure diagrammed in the link above is NOT the procedure Bill will have.  I'm including this picture to show you that a pneumothorax (or collapsed lung) occurs when air escapes from a hole in the lung and gets trapped between the lung and a surrounding membrane.  The affected lung is unable to expand fully and therefore the body's ability to oxygenate blood is greatly reduced.  This diagram also shows a chest tube (Bill currently has two) that are hooked to a very gentle suction device.  This pulls the air from the pneumothorax and allows the lung to expand fully again.  I'm not sure if  Bill's pulmonary doc is concerned that the chest tubes aren't working that well or that this part of his lungs has already failed a couple times in the past or perhaps both.  Either way, I will describe the corrective surgery when I learn a little more about it.

Aside from that, I think he's doing pretty well this week.  Because of the lung issues he is not able to do much in the way of physical therapy, but he is having a good visit with Dad and Nancy.

Sunday, January 10

Bill has had a quiet weekend and done some much-needed catching up with Dad and Nancy.  The chest tubes seem to be alleviating his breathing and it looks like his lungs may be slowly improving.  He's been on bed rest and has not been in the wheelchair since last week.  It is my understanding that he will get back to his schedule on Monday morning and I hope that he is strong enough to continue.  It's frustrating to lose more time and condition with these respiratory complications, but it is unavoidable.

Friday, January 8

This has been a tough week.  This morning Bill's lung collapsed a bit more so his doctor inserted another chest tube.  It seems to have made a big difference and he is definitely breathing more easily now.  I'm afraid his lungs will always be problematic.  Part of it can be explained by "tall skinny guy syndrome" (for some reason all the respiratory therapists seem to comment that guys with Bill's build have weak lungs) and part of it can be explained by his smoking habit.  Folks, smoking is bad news and it won't take decades to get you into trouble.  This whole experience has convinced him to quit (not that he had much choice in the matter!) but it also means that you can't smoke around him.  Secondary smoke will irritate his lungs just as much and while it is possible to live on a ventilator, it's not much fun.  I will continue to harp on this because my little brother is tethered to a hospital bed in respiratory failure and unable to get up and get going with a full rehab regime because of this.

Earlier this week, Bill started working with his occupational therapist to learn to eat using adaptive equipment.  He does not have any use of his hands or wrists so it's been difficult, both physically and mentally, to have to adjust the way he used to do something always seemed so simple.  The injury he has is pretty severe and I don't know how likely it is that his hand and wrist function will return.  Only time will tell.

Posting will be light over the next week because I'm heading home.  After nearly eight weeks of being away, I'm ready to soak up some time with Mike, some sunshine, and some green chile. 

Wednesday, January 6

I had hoped I would have more news to report this evening but such is not the case.  Bill is still getting antibiotics to treat to the infection and to make matters worse, he had another collapsed lung today.  Between those two factors he's been feeling pretty lousy.  He should finish this round of antibiotics tomorrow and his doctor inserted a chest tube to relieve the pressure on his lung.  A few steps forward, a few steps sideways.  I don't know what direction we are moving in anymore.

In better news, he is eating so well that his tube feeds have been discontinued.  He still receives some medications through the stomach tube, but at some point that will be removed.  Tubes go in, tubes go out.  It's all part of the process.

The chest tube should not interfere with Bill's ability to sit up in the wheel chair, we'll just have to be extra careful transferring him.  It also won't interfere with ventilator weaning, although at this point he is still not ready to be unhooked and breathing on his own yet. 

Benefit Account

Bill is doing just fine and I will have a more detailed update this evening.  We are in a bit of a holding pattern while the urinary tract infection clears up and that's why I have not bothered to post daily.

I've had a couple people ask about the benefit account and how they might make contributions if they aren't actually in the mid-Ohio Valley.  Just make out a check payable to:

Andrew William Beck Benefit Account

and then mail it to:

Peoples Bank
PO Box 738
Marietta, OH 45750

Sunday, January 3

Bill is currently fighting off an infection so between feeling run down from that and feeling run down from the antibiotics, the weekend was relatively quiet.  His lungs continue to get stronger and I heard a rumor that tomorrow he will start going off of the ventilator for periods of time.  Here's hoping it goes better in Atlanta!  He also no longer needs to wear the neck brace when he's in bed.  He looks so much more like himself without it and it's a relief to see him shed medical equipment.

Our Uncle John was in town and he and Bill had a very good visit.  If you are interested in coming to Atlanta, please let me know when you would like to make the trip.