Seth-n-Jode's Adventures

We've been on many a ski hut trip, bike trip, hiking trip.  A common theme that happens is you end up playing some sort of card or dice game in the hut or tent at night.  This usually involves a lot of cheating, particularly if Seth is involved.  :O)

On our Durango to Moab bike trip, we were playing Jelly Poker.  Since we didn't have poker chips, we used the jelly packets that were provided by the hut as our "chips".  Jelly up!  Joel was trying to play straight up poker but he had met his match.  Seth never plays a straight poker game so there was a fair bit of card passing going on. 

On our annual 'versary trips (every February, we rent a condo somewhere for a ski weekend for our wedding anniversary), we play Cranium.  Seth had us all believing how the game was supposed to end and we played for hours until finally Joel read the rules and straightened us out that you didn't "have" to roll a purple to end the game which Seth had us all believing.  We all had a good laugh.  Joel likes to play by the rules which Seth works to break before or even after the rules are announced.

On our annual Thanksgiving hut trips with Lori and Steve and a number of friends (as shown above), we play farkle and truth or dare jenga.  The dares often involve sticking your head in the snow or running around the hut outside with only your ski boots on.   Things of that sort that gladly we don't have too many incriminating photos of!

You are probably wondering where I'm heading with this.  Sometimes I wonder myself!  Stay with me dear reader!

Today, Mom and I were arriving at Seth's room and we happened to chat with someone outside his room.  Just as we walk in, we see Seth hurridly putting on his sling.  He knows he supposed to keep his sling on but he had taken it off and was trying to get it on quick before we came in!  A common them to Jelly Poker, Farkle, Jenga and Cranium. 

I gently admonished Seth about this.  He really has been pretty good about it and keeps it on most times.  But he says it gets so uncomfortable to just keep his arm in that sling with no movement.  The PT says he will be ok as long as he doesn't move the shoulder too much and just moves his hand and wrist and lower arm for now  By the way, his left hand and arm are really gaining strength.  He used to have to move his left arm with his right hand.  Now he is able to move his left hand and arm on its own which is a really positive development. 

We did get the results of his brain and left shoulder MRI's when I got a call from Dr. Yarnell, Seth's neurologist.  The brain showed that the diffuse axonal injury is healing.  Also the neurologist said he didn't see any tendon or ligament damage in the left shoulder.  So that is really good.  The PT said she thought the left arm will just continue to get stronger and stronger with rehab and healing although it may take some time for the nerves to heal.

They put some boxers and a t-shirt on Seth today. He doesn't look so "hospitalish" in these clothes and I really liked the new look. Thanks to Sue (our sister in law) for buying him the boxers! And they took the bolster that they have strapped between his legs and changed it out with a pillow (at least in the day time) that is still strapped between his legs.  He said that was a lot more comfortable. 

He ate his lunch and half of my lunch today as well as a power bar we brought for him.  I'm really happy that he has a healthy appetite. 

We are also working to get the catheter out.  They do some bladder training and then will take it out.  That will be the last tube thats in.  All the others are gone now.  So we'll have to celebrate when he gets that one out!

The doctors, nurses and staff at Kindred are really nice.  We've gotten to know most of them.  They work so hard.  It gives me a real appreciation for how much work a medical career is.  I really raise my glass to all you doctors, nurses, LPN's, CNA's, etc out there!  

Mostly, it is so nice to just sit and talk with Seth for much of the day.  I feel like I could talk with him for hours about anything, nothing, and everything.  To know that he is there mentally and will be there physically is a huge relief even though I still worry about him taking off his sling every now and then!  What can I say?  Its my nature to worry and its his nature to bend the rules!

Seth had his followup MRI of his head as well as his left shoulder today at St. Anthony's.  As they wheeled him back in to his room at Kindred, he was in a friendly argument with the ambulance drivers about who the name was of that computer in 2001; A Space Odyssey.   They thought it was a woman but Seth was sure it was a man.  Anyway, he said that particularly when his brain MRI was being done, a voice told him to stop squirming around!  And he said it sounded exactly like HAL in the movie.

Seth said that the MRI was a bit unnerving.  He said he got a little claustrophobic.  And that there were these loud clunking and thunking noises all the time.  He was in the MRI for a little over an hour.  Anyway, I think this picture kind of depicts what he felt like when he was in the MRI machine especially when HAL started talking! 

I'll ask the doctors for their results of the MRI's tomorrow.  We didn't get any results back today.

Anyway, I wanted to pass on some good news.  Our social worker, Bob, came in to our room today to inform us that Seth is going to be moving to Craig Rehab in Englewood, CO (craighospital.org) next Wednesday!  They said they would move him about 10:00 a.m. or so in the morning!  Although I can't empathize with a parent since we don't have kids and are mere humans to Kitty, the feeling I had was probably one similiar to when your kid is accepted to Harvard or wins the Nobel Peace Prize or something like that.  It was pure euphoria.  I just know that Craig is the right place for Seth to heal 100%.  And maybe even they can improve his handwriting too!  So we get him back at 102%.  Who knows!

We did math problems with Seth today.  He's really coming around on that and is doing his "serial 7's" where you subtract 7 from a 100 and then keep subtracting 7 nearly perfectly.  Also his short term memory seems to be coming around some too.  He is remembering most of what I've told him and what has been happening the last couple of days. 

He read the blog from yesterday out loud and laughed at the picture, stories and responses.  We took him for a walk in his stroller chair.  Basically, I just love to be near him and see his smile and laugh and hear his voice as he banters with everyone in the room.  He keeps getting better and better everyday.  Little things, like he is now asking visitors questions about their lives and holding conversations with them.  He's getting back his typical impatience.  He quizzed me today on what the "process" was going to be to get him out of "here", what the next step is, and why the heck is it taking so long!  At the same time, he is very appreciative and often thanks me and my mom for our efforts to make sure he stays on track.

I wanted to end the blog this evening with an invitation.  Seth's 43rd birthday is on Sunday.  He wants an ice cream cake so I'll be buying him one and we'd like to invite anyone that can come to join us between 5 p.m. - 7 p.m. on Sunday afternoon for a little birthday celebration and ice cream cake at Kindred, 1920 High Street, Denver, CO - Room 309.  No gifts necessary.  We'd just love your company and to celebrate that Seth is alive and kicking and will be 43 years young.  Although as he always says, its not the age, its the mileage....

Seth got his first shower in over three weeks today!  He said it was one of the most satisfying showers that he has ever experienced!  Just having water splash over him.

He can now be at 90 degree upright sitting.  So they are using this lift contraption to move him from bed to chair (either a regular reclining type chair or a commode chair).  He likes the chair but he says it makes his butt sore.  And its no wonder.  He barely had a butt to begin with and they just weighed him and he is down to 124.4 pounds (down from his normal weight of 145).  And he is eating everything they give him.  They have just said that his body is consuming lots of those calories to heal the bones.  We are pushing food down him every opportunity that he accepts it.  But he still looks pretty much like a living skeleton.  Got to get some meat back on that boy's bones!

The physical therapist came in and did range of motion on both his legs.  He said he is going to order some sort of device that moves Seth's right leg constantly and slowly to make sure it doesn't lose any range of motion.

The doc came in and said Seth is really improving.  He estimated his mental capacity at about 90% of normal and that he thought the neurological rehab will bring him back 100%.  The Craig Rehab admissions folks came in and are looking to get him a spot hopefully even next week.  They said he has advanced so fast neurologically and he needs to get into neurological acute rehab as soon as possible.

So depending on how it all plays out, Seth may get his neurological rehab and then they will let us come home.  And then he either comes back to Denver, once he's weight bearing on his legs, for his orthopedic rehab, or we'll do his orthopedic rehab in Durango.  A lot depends on this orthopedic appointment Seth's got on Monday.  If we come home, I'll be temporarily revamping the main level of the house to accomodate him while he's still not weight bearing on either leg (which will still be a month or maybe two out by the time we come home).  We have a four level house that isn't very handicap friendly.  In fact, anything but.  However, I figure I'll take over our main level which has the kitchen, dining and sitting area.  We'll make that into our campspot.  I'll put up a bedside commode (since we have no bathroom on the main level).  And I'll shower him out on the deck.  It will be the  Molas campsite extraordinaire!  Anybody want to come for a sleepover??? :)

The picture today has a funny story behind it.  We were in South America back in 2000 on our 6 month walkabout.  I had convinced Seth that we needed to go kayak the "most remote stretch of whitewater" in the Ecuador Amazon basin on the Coca River.  He reluctantly agreed since he knows that any trip with such superlatives usually means some sort of agony will occur somewhere along the way.  It took us two days to get there by bus.  We were stopped half a day by a landslide.  We finally got to the town where we started our walk to the actual put in for the river.  We hired a horseman to take our kayaks in for a few miles until it got too steep.  Finally the horses had to turn back and Seth and I continued.  We roped our kayaks down this very steep jungly pitch which took a few hours with lots of slipping and near misses of losing the kayaks altogether.  Finally, just as dusk fell on our third day to this river, we reached water. 

It was this beautiful stretch of river.  As remote as I've ever seen.  Huge waterfalls coming in from the sides of the jungles.  One night we were making camp and this family just appeared out of the bush.  They had these big machetes and were carrying these big green leaves they had just cut.  They had seen us coming down the river and had cut us a bed to lay on for the night.  They were so nice.  We could communicate with them a little although their primary language was Quechua and they knew very little Spanish. Mostly we communicated via hand signs.  We gave them some of the supplies we were carrying (duct tape, extra tuna, and some rope) and they really seemed to appreciate that. 

Did I mention the bugs?  They were swarming everywhere.  These little gnat like creatures that nearly drove us crazy.  We had taken malaria medicine so we weren't worried about that but the bugs were nearly eating us alive.  Needless to say, we had bug bites all over when we finally reached the take out.  We hitched into this town and were just dying for a hot shower to wash off all the grit, sand, dirt and bugbites of the past seven days.  So we found the best place in town which was a ghastly $4.00 per night but advertised nice hot showers.  (We were used to paying $2.00 per night!)  Anway, Seth jumped right into the shower and here's what he got.  Not too satisfying!  Certainly nothing like today's shower was!

I feel like I am in a storm.  Winds buffeting me from all sides.  Hurricane force gales threatening to topple me. And yet I feel this calm, deep, sense of peace...sometimes.  I vision my roots going down to the center of the earth and that even though the sea is violently hurtling me 'round up top.  That it will settle.  The world will right itself around me.

And here's what I'll see!

We had a good visit to Mapleton rehab today.  They have an impressive facility.   We also had a good Family Care Conference.  Our social worker said it was the best agenda he's ever had.  Thanks to all of you who helped me edit it and who also attended the call. Sorry the conference phone reception was a bit spotty and some of you on the phone had trouble hearing.  Most importantly, we got a lot of questions answered.  Seth is moving up the scale in all directions. 

Orthopedically, they now have him where he can sit at 90 degrees.  So they have brought in a new chair which lets him be more comfortable.  He also gets a shower on Thursday.  Hooray!  He's pretty excited about that after being sponge bathed for the past three weeks.  They do worry about him using his left arm which is supposed to be immobile in order to heal.  Seth has been hanging it up on his trapeze bar.  He's such a monkey.  But Seth did agree that he would keep his sling on most of the time from now on.  We'll have to keep a watch on it as he really gets uncomfortable. 

Cognitively, huge improvements.  He's concentrating longer now.  He graduated past the problem solving cards.   Although the therapist sometimes says it takes her a second to get his humor.  For instance, after successfully showing him a series of "problems"; ie forks in toasters, smoke in a room and him correctly responding what the issue was and what to do about it, she showed him a picture of a little girl with a book of matches that had only three matches and she was trying to light one match.  She asked him what was wrong with this and he said "Clearly, the little girl doesn't have enough matches!"  and then the same wry Seth smile. 

Speech therapy says he trys to do things too fast and sometimes makes mistakes.  They complain mightily about his handwriting and asked if it was really that atrocious prior to the accident.  (It was.).   His handwriting has always been so pathetic that when he writes me love letters, I have to have him read them to me! I told them they can use my laptop if they want to have him do his work that way so they can read his responses.  This dog isn't learning new tricks when it comes to improving his handwriting!   Anyway, he had a word game today where he had two words and had to think of another word in the same genre.  i.e, dog, cat and then he had to come up with horse or cow or something like that.  He did well although he got tired half way through and had to rest.  One of the items was twelve, seven and he wrote down 84 so it looks like his math skills are coming 'round too.  I told Seth that he has the time to slow down and do all this work right while he's healing and he agreed with me.

He also got an incentive spirometer today (which helps him keep his lungs in shape) and he's been blowing an impressive amount of air into it.

The doctor said he is doing great.  Huge improvements day to day. 

The nutritionist says he's eating well and we can feel free to bring him things from home to eat (which we actually had already been doing).  Mom's been making up his raw food fruit smoothie each morning.  Judy's filling him up with watermellon.  He's got a stack of toffee someone dropped off that he munches on from time to time as well. 

Seth has his followup MRI on his head as well as an MRI on his left shoulder on Thursday.  He also has his orthopedic appointment back at Denver Health on Monday and that's when we'll know more about how much longer until he can bear weight.  And hopefully he'll be doing well enough orthopedically that we can start looking to move him into acute rehab and then on home.  And/Or we may decide that he needs surgery on his left shoulder and left knee.  My thoughts are that if he's laid up anyway, try and get the surgery's done if they are necessary.  Seth agreed with me on this approach but said only to go with the surgeries if they are necessary.  He said if he can rehab his way to health, he'd prefer that to more surgery.

True story - Seth was a little blue this morning. I gave him a pep talk and he cheered up.  But, I think he is starting to realize the magnitude of his injuries and the time its going to take to heal.  Our social worker said this is common.  The patient's family has been through heck and back and is amazed at the progress.  Yet the patient is just becoming aware and is going through the same feelings that the patient's family had near when the injury occurred.  That being said, Seth is a fighter.  He will fight this fight.  I think he just realized today that this is a match that goes the distance.  No knock outs on this deal.

Mom and I went touring today.  I wish it were some sort of bike ride but it wasn't!.  We were touring the two acute rehab facilities in Denver.  Our first visit was scheduled at Craig Rehab which is in Englewood.  Wow, what an impressive facility.  Kenny, their provider relations person, took us in to his office.  He knew some of our situation. He listened to our whole story about what happened up until where Seth is now and where we want him to be.  He explained how the process works with a head injury.  That a large part of it depends on how fit and how mentally stable the person was before the head injury.   Both characteristics which are very much in Seth's favor.  He also showed us how much Craig makes the family part of the rehabilitation process.  I finally felt like someone on the medical side understood that this trauma had not just happened to Seth but all of his family and friends as well.  As we walked through their facility, they have pictures on the walls of their survivors.  People out kayaking, biking, hiking and leading normal lives.  It was so inspirational.  Kenny had also just gotten back from a trip on the Middle Fork of the Salmon and used to kayak and also rafts so we swapped some stories of rapids we knew in common!  We then went in a spoke with Maggie, who is their Director of Admissions.  She had looked into our insurance and was starting to make some calls on our behalf.  Seth will be evaluated by their neurologist and their clinical liaison this week.  The tricky part is determining when Seth is ready for acute rehab because he can't bear weight on either leg.    But all in all, it was a very impressive facility.

We next toured Spalding which was also nice but felt a more institutional.  Not the personal touch or more of the athletic focus that I think we would get at Craig.  Also, their liaison said the approach to brain injuries is to seclude them to make sure they are getting enough sleep and then let in stimulation little by little.  He was surprised that I was already taking Seth out for stroller walks.  But Seth really likes that. 

We are going to tour Mapleton Rehabilitation Center here in Boulder tomorrow morning.  Once we've finished with that tour, then I'll figure out which acute rehab facility I will start advocating for Seth to get a spot.  We have a Family Care Conference with Kindred tomorrow afternoon so I wanted to be sure that I knew where I wanted to head that ship prior to that conference as we start to plan for Seth's next steps.

Seth, by the way, is doing really great.  He continues to amaze me with his progress and I see him every day! He now pushes the nurse call button when he needs something and without me prompting him.  He is helping to transfer himself from bed to chair.  He adjusts his bed with the up/down buttons to make himself more comfortable.  He talks completely normally and cogently and he makes the nurses and his visitors laugh with his sense of humor. Although he does tell me sometimes he feels kind of fuzzy with respect to all that is going on sometimes.  The neurologist came in today and I got reports from the nurse that he is very encouraged with how well Seth's left arm is coming along.  There's alot more strength and movement then there was a few days ago.  The main thing from my observations is his short term memory is a bit spotty.  He remembers who visits.  But he doesn't remember what happened to him except that he thinks he got in a car accident.  So I tell him the story again.  I also wrote it down for him and put it on his board to help it get from RAM to Hard Drive!  I also have a note written that tells him to eat ALL of his food so that the nose tube doesn't go back in.  He's doing a pretty good job with that too so hopefully he won't have to get a feeding tube again.  His long term memory seems good.  He remembers all our trips I've talked about so far, where we live, etc, etc.  Also he has a really great attitude about this whole thing.  I got my smile and my kiss when I walked in today. 

The picture for today is Seth with my nephew, JP, my sister and my Mom and Rusty the dog  We were out snowshoeing near Rabbit Ears Pass to pick up a Christmas tree.  My mom and my sister along with JP have been such a tower of support for me during these past few weeks.  I just like to look at this picture and know that we'll have more of these kinds of trips ahead of us!