James had a great Christmas.  We went over to the mainland and had a big family dinner with the Avery clan.  James seemed to enjoy himself,  and handled the Avery chaos well.  It was noisy and crowded but  we were there for over 3 hours before he asked to leave.  Dinner was yummy and I brought our magic bullet so I was able to purée some dinner for him.  The ferry ride was an adventure.  On the way over we didn't think about needing to be parked by the elevator and having enough room to get the chair out.  We had to get him out of his chair and fold it and walk him in areas to get him through on the ferry ride over.  By the time we got him to the elevator,  they had locked it due to bad weather.  The crew were great and came and escorted us up on the elevator.  We learned from the ride over and on the way back we asked for handicapped parking on the ferry.

James is eating a lot more purée.  We have had to drop him from 5 cans of tube feed a day down to 3 cans.  He is staring to drink slightly thickened fluids too.  He is booked for a barium swallow x ray on  January 17th.  If that goes well I imagine the next step will be planning how to get to a point where he no longer needs the tube feed.

January is a busy month for appointments.  He is going to see a dental specialist in Victoria on the 4th.  On the 11th he goes back to Victoria to see the eye specialist. The 17th is the swallow test in Campbell River and on the 21st he sees the physiatrist (basically a doctor of physio medicine) in Nanaimo.  Also he will likely have another appointment in Campbell River to have a splint made for his right hand to help stretch some tight muscles and tendons.

He is seeing his physiotherapist 3 days a week,  and we are talking about having a rehab assistant who will come to the house to do exercises with him,  so that some of that is taken off of me.  He is doing well on his new walker.  We picked up floor to ceiling poles at ikea while we were on the mainland.  He is practicing balancing between them.

James has been definitely thriving since he came home.  He is loving harassing his brother and sister  and I am actually enjoying seeing him bug them!  It is amazing how the things that used to bug me I now see as huge blessing!  Who knew that I would be thankful that my kids are capable of scrapping with each other!

James has been home for just over a month now  and , wow,  he has been working hard!  His Physiotherapist is awesome!  He loves Physio,  and his balance is definetely improving. His physio therapist makes it really fun,  but works him very hard!  Its cool because he explains to James what muscles he is working or stretching,  so it becomes a bit of an anatomy lesson too!   He can also get down to the floor and back up using the couch to lean on with very little help.  He got a new walker last week and he walked into church today!  We left his chair at home!  He is also starting to eat enough puree to drop a can and half of tube feed a day!  He has an appointment with the Speech therapist again next week,  and I think she is going to be surprised!  When we saw her last, she okayed us to give him about 1/4 cup of puree twice a day,  and I was feeding him.  Now he is feeding himself and he is eating about 1/2 a cup three times a day.  He is wanting more though,  and is asking for something more solid than puree!  I am hoping to find a speech therapist to work on vocalizing with him.  He has mouthed at people a couple of times lately.  It has seemed automatic and while he hasn't actually said anything it is the beginning of automatic movement!  He can say "Hi" and "Hey"  though, if prompted.  It is a bit nasal and slow,  but with practice I am sure it will get better and can be added to!

James is home from rehab now!   He has come such a long way.  There is still a lot of hard work ahead,  but at least he is home!  Discharge day was November 9th.  He was so excited to be coming home for good.  He kept hugging the nurses and therapists!  There was a welcome home ice cream get together at the church on Saturday and James seemed to enjoy himself.  Our friend Robin made James  a blanket and James insisted that it go on his bed as soon as we got home! 

This week we have reconnected with our family doctor (he said that he would not have recognized him),  had a visit from a Speech thereapist who deals with communication devices and we will meet with James'  occupational therapist later this week.  Physio and Speech therapy will start at the end of the month and then life will get really busy!  We also have an appointment with his new physiatrist (specialty doctor)  in Nanaimo that week too! 

We are waiting to hear about recommendations from the neurologist who saw James in the hospital before he left rehab.  He had some ideas on how to calm the tremor in James right arm. 

It is so good to all be home together again!  Life is still far from normal,  and may never be the same,  but at least we are all under one roof again!   James is a very stubborn fella and who knows how far he will get!

James and his speech therapist at rehab called me with some exciting news today!  James had another swallow assessment today and he passed with flying colours with the puree!  It will still be quite a while before he can replace a meal because he needs to build up his swallowing muscles.  But he is heading in the right direction!  He is going to start working with the speech therapist on monday next week with taking a little bit of puree by mouth everyday!  Then next Friday is discharge day!  He will be really home at the end of next week!  He also came home with a walker the last two weekends.  He is doing quite well with it and we will be able to borrow one from red cross.  He is still  needing a spotter when he walks,  as his balance and reflexes are still not great.  But I notice a difference each weekend! 

Last weekend Mark drove down island to pick up an adult trike bike that was offered to us from some friends of Gramma's for James.  We had an opportunity to take James to the local school parking lot to try it out today.  James loved it!  He didn't want to get off and rode it home!  After we got home he asked when we could go for a family bike ride!  He rode it for about half an hour and would have liked to continue!  I guess whenever we get a break in the weather on the weekends we will be taking him back to the school to practice!

 

We had a nice longweekend with James home this past weekend.  I picked up a connect four game and he had a great time winning against all of us!  James is working hard on all his therapies.  He has a lot of exercises to do each day for his speech and language therapy.  His swallow is still a bit slow and not timed well enough to take anything by mouth yet.  He also has a bit of a cough that wont go away.  We are hoping that the exercises will help and he is going to get another assessment done either the last week of October or the first week of november.  If his swallow still isnt better he may have to go to a specialist for a scope of his throat.  It is possible that there is some scarring that could be getting in the way.  Last week he had an EEG because the doctor thought that the tremors in his right arm could be seizure activity ( I didnt think it was, since it shakes all  day and then stops when he falls asleep)  He was on the EEG for an hour and a half and his arm shook the whole time,  but no seizure activily showed up.  So they are pretty sure it is a brain injury related tremor.  It may just go away with time,  but the doctor sent a video of the tremor to a specialist in Edmonton.  James new chair should be arriving in the next week!  Then he will have an ipad mounted on it at the end of October.  The ipad will have his communication program on it.  James is super excited about halloween and I am planning to bring him home on the 31st for a super long weekend that week.

It  has been 8 months today since James' accident.  He sure has come a long way!  When I get feeling down about the whole situation I try to look at where James was 8 months ago!  Who knows what he will be doing in another 8 months. 

I was amazed this week at how much smoother his walking is getting.  In physio he is walking using the rail in the hallway with the therapist doing very little supporting.  He has also been doing some work on the mat in the gym.  They have him going from laying down to up on hands and knees to kneeling and balancing on his knees.  It is a lot of hard work!  His goal for physio is to be able to walk with a walker 50 meters with minimum assistance by November!

The speech therapist is planning on a swallow assessment soon!  The goal is to have him taking enough by mouth by mid November that he will be able to replace one tube feed meal a day with a meal by mouth! 

He is working on becoming more independent with self care too.  He is working on dressing himself with minimum assistance and the rehab assistant was telling me that he is trying to tie his own shoes!

Last week the doctor took James off of his medication that helps with anxiety.  Good news was that he did not become any more anxious off of the medication.  However the tremors in his right arm have increased a lot.  The medication is known to mask tremors.  So they are putting him back on it,  and will  try cutting the dose down gradually again in a month or so.  As he becomes stronger it is likely that the tremors with ease.

This is the "I told you I could get in your truck, Mom!" smile
 I figured out how to add photos to my blog!!!!  This has been the first week that I am backing away from being with James everyday!  I came home on Wednesday and and going back to pick James up for the weekend on Friday.  I am not sure exactly what next week will look like, but I may just play taxi and come home!  It sounds like James did well without me today,  I did call him and got an update this morning and he called me this evening.  They are also taking him off of one of his meds this week!  He seems to be doing fine without it,  and the fewer meds he is on when he comes home the better.  Review date was on Wednesday too and a discharge date was set for November 10th.  It is nice to have a date for his return home rather than hearing maybe

James using the Nu Step crosstrainer at rehabanother month....                                                   

First weekend visit home

 

James came home for the weekend for the first time in 7 months last weekend!  He enjoyed himself greatly!  He wanted me to take pictures of him with all the pets so he could show them to the hospital staff.  We got pictures of him with some of the pets and then I just started taking pictures without James in them!  He also went to church for the first time since his accident.  He did very well and enjoyed seeing everone again! 

He is doing great in his therapies.  He is walking with just one person assist using the wall rails in the hallway.  His balance and his core strength are starting to really return.  He is taking a writing class and loving it.  His printing is getting quite legible.  He is starting to really text and use his facebook messaging without assistance and a few people have recieved messages from him.  He is doing well at his speech and language therapies,  progress there is slow,  but it is progress!  He is starting to dress himself.  He is able to get his shirt on and off himself and needs just a bit of assistance with pants.

We are heading home again this weekend and looking foreward to a long weekend!  The plan is to go home for the weekend every week now!

We bumped into the neuro surgeon who did James' surgery today!  It was really cool because he recognized us right away,  and was very pleasently surprized!  He may come up to visit James tomorrow morning!  He said that he might make it for physio tomorrow! After the surgery he really didnt think that James would wake up and told us that he would be paralyzed on his right side,  so I am super pleased that James was able to prove him wrong!

We had a fantastic weekend with James.  All his sleep over passes went great.  We decided on Saturday to see if we could transfer him into the truck.  I got him standing by the passenger seat and had just commented that we wouldnt be able to get him in because the seat was too high.  Next thing I know he is in the truck trying to close the door!  He came for a drive and went to Walmart   with us!  The smile on his face did not fade for the hour that we were out!  We went for another drive on Sunday.
James started a group hand class this week.  It is his favourite therapy!   Although when I asked in front of his occupational therapist,  he told her that OT is his favourite and that she is his favourite therapist!  What a teacher's pet! 
He has some more physio time added to his scheduel now too.  They work on walking with the walker in his morning session and balance in the parellel bars in the afternoon.  He is doing great!  His movements and reactions are still quite slow,  but I am seeing a difference in the speed of his movements.  His balance is definetely getting better too. 
He restarted speech and language therapy too.  He seems to be enjoying those sessions too. 
Next week there will be a therapy assistant working with him in the mornings to help him become more independent with self care.  He is already brushing his own teeth and washing his own  hands.  He is starting to help with dressing as well!
He is now spending weekend passes with me and in two weeks we are planning a weekend pass home!  His next rehab review date is September 12th and hopefully we will have a clearer picture of when discharge will be at that point.  I am not in a rush though!  Outpatient rehab is pretty much nonexsistant in the valley,  so the more we can utilize here the better.

James is still doing awesome at his therapies.  On Friday he did a full lap around the unit with the u step walker during physio!  His therapist said that that is about 90m.  He was quite tired afterwards though.  His Occupational therapist is going to see if she can get him into a group therapy too.  He seems to be losing his fear of people,  so I think a group would encourage some social interactions.  He is super excited about Wednesday this week too,  he is going to spend an overnight at Jeneece place with me and his brother!  Then this weekend when his Dad and sister come to visit,  he will spend the whole weekend at Jeneece place with us!  The nurses will do some training with me over the next couple of days around the tube feed and medications.  I am pretty comfortable with them already,  but just need to officially have some training.  He has a new speech therapist now too.  He will start working with her on Tuesday.  He is starting to move his mouth,  wanting to talk,  but is unsure how to form his lips and tongue and is having trouble making sound when he wants to.  He has a great vocal laugh now,  and does make some sounds when he is working hard at something.  Just no actual speech yet.

It has been just over 6 months since James' accident.  I have been too busy to really think about that though!  he has been doing awesome at his therapies.  In the last week and a half he has graduated from the parellel bars in physio to being assisted in the U Step walker.  Each time he has a session in it he gets a bit better at it.  He sent his first text by himself this week too!  He is getting pretty good at typing on the ipad.  He is needing less assistance with his transfers too.  He gets himself up and mostly just needs support for balance.  He seems to working on wrapping some of the nurses around his little finger too.  Last week he convinced the night staff to get him up at 5:30 am to play video games.  Yesterday morning it was 3:30 am!  When the morning nurse came in she put him back to bed for a couple of hours.  He still did great in his therapies though.

Well tomorrow will be 3 weeks in rehab for James.   It has been a rough 3 weeks,  but I think he is starting to settle in.  They changed his meds just after we arrived and he became very anxious and we were given an ultimatum that if he didn't cooperate and participate in therapy by the end of this week they may have to send him back to Comox.  A new doctor saw him on the weekend and was able to get his medication back on track and he has had a much better start to the week.  He has become completely continent this week.  Not only during the day but at night too.  He got a new communication device today.  It has words in it and has predictive software so it is much faster than typing everything out or sign language finger spelling!  He loves gadjets and this is a pretty cool gadjet!  When we were getting him set up with the new gadjet today his favourite LPN came in to unhook his feed and give him his meds.  The OT prompted him to say something to the nurse.  James went into the social page and chose " I appreciate your assistance " and then he typed in "Bud".  It was so funny!    He is walking with the paralell bars in physio.  Yesterday he didnt want anyone actually touching him.  He walked the second half of the session with just verbal cues!  

 James got his transfer to Victoria rehab on Thursday last week!  So James and I are in Victoria now.  He is doing well and enjoying his therapy sessions.  He tryed to pull his feeding tube out this weekend though.  He got all the clamps and "hardware" off of the tube yesterday morning and had to go to x ray to make sure that it was still in place.  I have asked physio to come up with lots of weekend homework for him this week!  This boy needs to keep busy!  There are no therapy sessions on the weekend so I think that it had a lot to do with boredom.  It was interesting too,  I woke up last night with a start early in the morning hours.  I was having a dream that James was trying to pull the tube out again.  This morning I got to the hospital to discover that he pulled the tube apart again early this morning!  He didnt sleep really at all last night and was totally exsausted this morning.   He could barely keep his head up,  or his eyes open.  He was a trooper though and did all his therapies.  He perked up a bit during physio though,  and then had a great nap mid day.  His feeds changed today too.  He was being fed all night at a slow rate,  now he is being fed at a faster rate,  three seperate times.  Tonight is the first night in a long time that he can sleep without being disturbed or having to stay sitting up.  He will be able to lie right down from 11:00 tonight until 530am.  He has a special call bell on his bed too,  and he has used it.  It is a flat disc that he just needs to push.  Today in physio he got to try a new machine in the gym ( after an assisted walking session with the physio team)  The machine is called Nu-step.  He sits on a seat and it has walking peddals.  It also has "ski pole type" bars for your arms.  He really enjoyed it and had fun trying to make it go as fast as he could.  He did a great 5 minute session on it and we will increase the time he spends on it each session.  The wheelchair he has here is a lot different than the one he had in Comox too.  This one has very little support and no head rest.  He is doing really well with it.  I do try to get him to have a couple of short lie down in bed times during the day right now to rest his neck and shoulders.  He seems to need to have a break from the chair less each day though.  All in all things are going well.

Still waiting for transfer to Victoria for rehab.  If nothing has happened by the time we reach a week of waiting I am going to see about nagging.  The squeeky wheel gets the grease!  Yesterday James got to try the parallel  bars for walking.  Rick was right there for help and correction and had to help with mostly verbal instruction and and correction  quite a bit,  but James did the work.  He did awesome!  Before bed I had him standing and sitting at the edge of his bed quite a bit too. 

When the nurse came on shift last night she popped in to see James and myself.  She had picked up a gift for James!  She is going off shift for 4 days and wanted to get it to him in case we were gone when she came back.  It was so sweet. He reached into the bag and pulled it out on his own. She got him a series of little stuffed animals and a stuffed flower.  She wrote a note to explain the significance of them.  The flower is because a flower blooms year after year and so will James.  The lion is for bravery,  The donkey for stubborness ( which will take him a long way in rehab) and the giraffe to remind him to keep his head up ( physically and emotionally).  Those are definetely going to Victoria with him!

Alot has happened this week!  James used a regular walker yesterday for physio.  Rick( physio guy) was unsure about how it would go, but was game to try it.  He put a belt with handles on it on James and had him hang on to the walker.  He warned him that he may wind up on the floor,  but that he (Rick) would make sure it was a slow easy landing.  James kept strong on his legs the whole time!  He was not ready to stop when time was up!  He is constantly signing "I walk" and has been mad at me because I have to keep telling him that he has to wait for Rick!  He is desperate to come home and often signs, " I can go home!"  and "I want to go home". Tonight he signed to me that he wanted "Rock, Roll" and the name of a band he wanted to listen to that is on his mp3 player!  He has been cooperating beautifully with the staff this week,  and tube feeds are no longer a fight!  He wants to use the bathroom in a bad way,  and we have gotten him in there a few times,  with success.  But the bathroom is so small that it is difficult to get him in and out of there safely. He also needs to practice his mobility more to become better at it and he only gets physio for a half hour at a time 3-4 times a week.  He has also started to finger type on the keyboard with fairly good results.  He has also started drawing recognizable letters on the ipad with his finger.  He rocks at playing tic tac toe on the ipad too.  He always either wins or ties.  Speech and language has been very impressed with him too.  He is doing some great work with doing exercises with his lips and tongue.  He is following direction to open his mouth and let her look in his mouth with a tongue depressor.  He is now putting on his own shoes with just a little help,  and brushes his own teeth.
Now the big news!!!  James is on the transfer list to go to Victoria to be assessed for rehab at Vic General! 

I told James tonight that i thought that it was unfair that he is making me blog twice in one day! So tonight I put James back to bed ( without a sling! He transferred himself!) and he got very upset after he was in bed. I did eventually guess that he wanted to walk some more! When I was trying to guess at what was upsetting him, and he started trying to write in the air with his finger. I could not for the life of me figure out what he was writing though. I started showing him the sign language alphabet and he was copying me mostly with his right hand, the second time through I said the letter and he knew the first half of the alphabet! His speech and language therapist is going to be shocked when she sees him next! She has been trying to get him to stick out his tongue. He not been wanting to cooperate. Today he started sticking his tongue right out and moving it around when asked. Being able to manage his tongue is a big part of being able to start to eat. Tomorrow James' doctor and Speech and language therapist should be stopping by. I am super excvited to tell them about his week!

Oh My!!!!  Today has been amazing and it is only 11:00 am!  James was not suposed to have physio today,  but when I arrived this morning he was rip roaring ready to go and trying to sit up in bed and putting his legs over the edge of the bed.  I told physio what he was doing and Rick came in to work with him.  He suggested that we see if he can sit on the edge of the bed.  We put the walking sling on him but did not hook it up.  James` girlfriend, Rae, was visiting today,  so after James got himself sitting on the edge of the bed with just a little bit of help,  Rick got Rae on one side of James and myself on the other.  He instructed James to put his arms around our shoulders and move his hips to the edge of the bed.  Then he told James to stand up.  James followed instructions beautifully!  He was antsy to take steps, so starting slowly we walked with him around the room.  He picked up speed and coordination as we went.  Rick kept having to nag me to keep up because James was taking big steps and picking up speed!  Lol!  We were hoping to walk out into the hallway,  but James stopped when he realized we were headed for the door,  we turned around and stayed in the room and he kept walking.  Tomorrow we are going to try the big walker again and just use a transfer belt instead of the walking sling.  He still has no speech, but he is starting to use signs and we are starting to hear different vocalizations.  I am hoping he can go to rehab soon!  At this rate it very well could be rehab in Victoria!

I have been reminded again about how long it has been since I blogged!  Wow,  it is sure hard to find time these days. 

James and I went to Nanaimo Hospital yesterday for him to have an abcessed tooth ( a molar that was badly broken during the accident)  removed.  We went down in a St. Joseph's ambulance. He got his legs out of the blankets and straps early on in the trip and the attendant ended up giving up trying to get his legs back in.  Every time she wrestled one leg into the blankets and straps,  he would take the other one out!  It was kinda comical.  He spent the trip to Nanaimo lying on his back on the stretcher with his feet on the ceiling,  or waving a foot at the back window! We were supposed to leave at 7 am but they were running late and we finally got going at just before 8 am.  We arrived at Nanaimo Hospital to find out that they were not prepared with a bed for him.  Since it was day surgery they just assumed that he would sit in a normal chair and wait his turn.  They finally put him on a stretcher in the hallway for about 3 hours,  then onto a bed in a storage alcove for another 7 hours!  The appointment that was originally booked for 9:30 am finally happened at almost 8 pm!  James was exsausted by the time they finally got him in,  he kept trying to doze off during the day,  but a hallway in the hospital is not condusive to sleeping!  He actually handled it very well.  They had sedatives ready for him if he needed it,  but he did well  all day.  I ,however, could have used the sedative!  I went in with him when they were putting him under,  but he was a trooper and lay perfectly still while they placed the iv line.  He grimaced but did not move a muscle.  He also let them use the mask on him.  Before they got a look in his mouth,  one of the doctors asked me who diagnosed the abcess.  I kinda looked sheepish and she asked,  "did Mom?"  I told her I had.  Not even his GP has seen the tooth properly!  I called it right though.  It sounds like the infection may have been fairly extensive.  The roots to that tooth went quite deep and entered the nasal cavity,  so they had to patch a hole after they got the tooth out.  Poor guy,  today he looks like he has a golf ball in his cheek.  We finally arrived back at St. Joseph's Hospital at midnight.  What a long day!  Poor James had been fasted for 24 hours by the time we got back to his room! 

James seems to be slowly coming out of the agitated/agressive stage.  He still has moments,  but he has been much more controlled.  We are still trying to keep stimulation to a minimum.  If he is going to get worked up it seems to be when there are more than two people in his room with him, or if his day has been too busy.  He is starting to communicate with not only us,  but the staff also,  using head nods and shakes for yes and no.  His neck has been loosening up too!  He holds it up in the headrest most of the time,  and he is turning to his left a lot more.  He is swallowing more too.  I have been thrilled that he has been much more cooperative with physio and speech and language therapists. 

He had his first visit home last Friday!  It went really well and he seemed to enjoy himself.  His girlfriend came and visited and Grampa and Robin stopped by for Birthday cake.  James will be 19 on Monday! 

It has definetely been difficult to find time to update the blog lately!  James keeps me pretty busy!

 He is in the classic agitated and confused stage of his recovery.  He is very territorial of his room!  Especially when it comes to staff.  He seems to be having difficulty telling the difference between staff and visitors,  so visitors are pretty much just family for the time being.  We dont know how long this stage will last,  hopefully not too much longer,  because it is tough on us!  Most of his care has been being done by me, on my own,  because he gets very agitated when staff come near him.  He is getting much more coordinated each day and more alert each day too!  It is a bit like trying to dress an octopus in the morning!  Yesterday when I arrived in the morning I found that he had pulled the end off of his feeding line,  and his whole feed was on him and the bed and floor rather than being in him! Thank goodness it was just the end of the tube because at first I thought that he had pulled his tube out! So I started my day by giving him a bed bath,  changing and washing his bed and him and cleaning the floor around his bed! 

He seems to something new everyday.  Today he became obsessed with his socks and managed to pull them off using his hands a couple of times!  He is scratching his head and repositioning his glasses on his own now too!  All these little tiny things that we all take for granted are now huge exciting accomplishments! 

 I am crazy busy so I havent had much time to blog.  The specialist came to see James on Monday,  He said that James is very close to being ready to go to the rehab program in Victoria!  He will reassess him in 4-6 weeks and see if he is ready by then!  Right now,  I am the only person who can do anything with James,  This makes my life that much busier,  He has become very anxious around the staff and kicks and pinches and punches when they come near. This is a tough stage,  but a good sign.  Those that go through this stage have a better prognosis.  

James was busy today too,  making me blog again.  Today when I was reading to him I noticed that his eyes looked like they were following words.  He had speech therapy today so I mentioned it to her.  She had a little dry erase board with her and wrote "close your eyes" on it.  She showed him and asked him to do what it said on the board.  He did!  It's funny,  all the things that he has been doing lately,  and that is the one that made me cry!  We went with the activities group today for a walk in the garden today too.  It was beautiful and warm and the flowers blooming were lovely.  When I got home this afternoon,  I could see that part of my front yard was mowed and could hear a mower around the side of the house.  My wonderful neighbour was mowing my lawn!  Mark will be happy as that was on his honey do list for this weekend!  And that list is getting pretty long!

When I went into James room this morning I noticed that his tube feed was stopped and was only about 2/3 through.  I asked the nurse and she said,  "well.....let me tell you why!"  They started his breakfast at the normal time and peeked in on him shortly after,  all was well,  and they continued on.  Shortly after that one of the care aides just had a gut feeling that she should check on him.  He was on the floor!  There is some debate as to whether he slithered out between the rails or went over the rails.  General thought seems to be that he may have gone over the rail!  He is fine though,  and just after they found him he was laughing.  He had a quick x ray to make sure that he didnt dislodge his feeling tube.  He seems no worse for the wear.  The nurses and care aides though....are all in need of some sedation now!  Thankfully his bed was as low as it goes,  and now he has big foam wedges in the sides of his rails to hopefully stop any more escape plans!  I was bugging the physiotherapist this morning.  I told him, "One day you show a guy he can walk and the next morning he is crawling out of bed!"   He said "Hey I showed him how to walk not how to jump out of bed!"  Lol.  What a day!  He may be getting a bed alarm tonight too. 

James had an exciting physio session yesterday!  He got to use the walking sling for the first time and took his first half a dozen steps since the accident!  The physio team here is amazing!  They are working with James for about an hour 5 days a week.  I am hoping for more of the walking sling today.  I was telling James that I think I already see some muscle coming back in his legs after just one week of physio!  Speech and Language came and assessed James yesterday too.  She will come back again on Friday.  She worked on figuring out a system for yes and no,  and helping him force sounds out when he wants.  She took a look at his swallow reflex too,  and said that he is trying and can swallow but it is still a little early to do swallow test because his swallowing is still a bit delayed and inconsistant.  She seemed to think that it wouldnt be long before he would be ready for the rehab in Alberta.  She talked about some amazing work that they just did with a Campbell River Client of hers a year ago.
Found out a few days ago that James car is being used by the PARTY program at the hospital here.  I am upset that it is known by the youth involved that it is his car and they are then assuming that drugs or alcohol were involved (which they definitely were not!) .  I also have not seen the car an dont want to, and am very anxiety ridden over coming across it at the hospital.  Well yesterday I heard them paging the head of the PARTY program over the PA at the hospital and told the nurses about the car,  they looked outside for me and it may have been his car being used.  The Social worker went and spoke to the lady who heads the program, and she says that she cant guarantee that it wont be there again next time as she is not in charge of the vehicle used.  It sounds like the social worker will look into who is involved in what vehicle is used and try to ensure that it doesnt come back.  What a day!  From a super high with James' first steps to high anxiety and fear of leaving the building with his car being there!

James has been on the new floor for a few days now.  He got a new wheelchair that fits much better,  and the PICC line came out before he moved floors.  That was a little too exciting for my likes though.  When they pulled the line out, the end looked like it had been sliced.  The PICC lines that they are used to seeing here have a black tip on the end.  So they were concerned that there was a peice still in him!  They got a stretcher and put him on his left side and a torneque on his arm,  and were talking about a CT scan and possibly being rushed to Victoria for emergency surgery!  Until,  one of the head nurses came in and said,  Oh,  I am 99.9% sure that that is a power PICC and that is the way the end looks.  She ended up calling Pennsylvania to the manufactorer to clarify.  And sure enough,  it was all a false alarm!  James'  nurse looked as frazzled as I did!  She joked that we all needed a wee sedative now!  The rest of the move went much more smoothly!  I was hoping that his bed would move with him,  but we were told that he would have to have a bed from that floor.  I am not liking his new bed as it is much shorter and if he slides down it at all,  his feet are pushed up against the bottom. 
The planning meeting went well.  General feeling from the staff was that we need to find him some rehab!  On Thursday when Physio worked with James to was trying to get James to lift his head up (The muscles in James'  neck are working overtime and pulling his head to the right and down)  He asked James to pull his head up and show us how tall he is,  James stood up!  So the rest of the session consisted of asking James to stand and sit.  Physio worked with him again on Friday.  He helped James roll out of bed to a sitting position ( James was not happy about this and I actually saw some good anger going on!)  He got James sitting on the edge of the bed and asked him to stand up.  ( He did) .  They helped him use his hands prop and balance himself and eventually had him balancing himself in a sitting position.  I have noticed that since the physio sessions he is starting to use him hand more.  He will occasionally bring them to his face on lift them up a little. 
After the doctor did some asking about rehab options he told me that his consult in Nanaimo told him that the only rehab that would fit James is in Ponoka Alberta.  We are still exploring the options.  I think that the only real barrier to rehab right now is expressive language.  He still hasnt spoken since the accident and most rehab will not take non verbal clients.  We will have to see how that progresses.  Just because he isnt talking right now,  doesnt mean he wont. 
I am going to try sleeping at the hospital tonight.  So far two mornings in a row,  I have arrived to a drenched boy,  with a soaked brief and bed,  despirate to use the urinal.  Hopefully i can sort things out quickly in that department,  because I know that I wont last without sleep for more than a night or two.

James is probably moving to another floor in the next day or two.  We are having a planninng meeting at the hospital on Thursday and hopefully he will be able to start some rehab components on his new floor.  He will be getting his central line (PICC line) removed in the next couple of days too.  The only tube left is his feeding line. The specialist that James needs to see are all in Victoria,  so in some ways I am regretting transferring to Comox,  but it has been nice to touch base at home and the staff at the Comox hospital are lovely.  They have yet to find him a wheelchair that fits him though.  The one that they had a very short and narrow back and he was super uncomfortable in it.  It is also held together with electrical tape in places and has quite a wobble.  He is sitting up in a recliner during the day, right now,  which is better than staying in bed,  but he cant sit up straight in it and work his core muscles.  James had a great physio session yesterday!  They decided to find out if he had the core strength to hold himself sitting.  It went much better than expected!  It took a while to get his head up.  He has major muscle contractures that pull his chin to his chest.  Physio was able to work him up to a chin up position though and he looked great!  He cant balance himself in that position but he can hold his hips and shoulders fine! James has also started to ask to use the bedside urinal this week!  He crosses his legs to let us know he needs to urinate!
 I thought life would be simpler being home,  not true!  I have less time and feel more stretched than ever.  I only spend a couple of hours a day at home,  and I sleep at home.  When I am home I am cleaning,  doing laundry,  etc. 

Last night James was transferred to Comox! He finally arrived at 1130 last night. Today was busy with visits from the doctor, Occupational Therapy and dietician. James slept on the ride from Victoria to Comox. He seems to have settled in nicely to his new room. Tomorrow we will figure out a wheelchair for him. Tomorrow he starts physio. I am sure it will be another busy day!

When I arrived at the hospital this morning James' Physiotherapist was working with him. He was totally showing off! He reached up to touch her hand with just a little support and straightened and bent his legs when asked too. She suggested that we try him on the pedal machine in the ward gym! She set it so that it moved his feet and then let him do it a bit with coaxing. He did fantastic today! This evening he kicked his legs up to touch my hand too! I asked him what we should do for a "high five" and he kicked his foot up again so I "high fived" his foot and he laughed. I am amazed at what progress he has made this week. The physiotherapist said that he still needs to work on endurance to qualify for rehab. but I am hoping in a month or two we could be deciding where to apply to for rehab! James is still struggling with language but he is making his wants and needs more obvious with grimaces and smiles and laughs.

James may be transferred to comox in the next week! It will feel good to get home, and when he is ready for rehab he can transfer back to Victoria. James was a busy guy today. He has been allowed to get up in his chair twice a day for the last three days. He has gotten up for three hours in the morning and two hours in the late afternoon. Today he was awake and moving around a lot almost all day. He was finally settled when I went to say goodnight tonight. This morning when I arrived at the hospital I sat about midway up his bed facing him and was talking to him when I felt a knee in my back! When I reached back and touched his leg he laughed. Then he did it again . When his nurse came and was talking about suctioning his trach tube, he turned and open and closed his teeth at her. It sure seemed like he was warning her! When I went to see him to say goodnight tonight his nurse told me that he was grouchy with the girl from respiratory therapy too! He was apparently pushing her away and making unhappy noises at her. I think that he is feeling about done with the trach and being suctioned! Yesterday was a beautiful day and we were able to take James outside for the first time in 2 months! It was so nice and I think that the different scenery may have helped to bring him to a slightly higher state of awareness today!

Well,  I guess that the presentation to the nurses went well,  they have asked me to speak to the next class next week!  Last time I made notes on my phone and pretty much winged it.  This time I have put together a power point.  James is going to help me this time too.  The students are going to come to his room.  I think that it will be good for James to see see some young people.  I can get him to help me push the buttons for the power point too.  We might practice a bit this weekend! 

He was in his chair for 4 hours again today.  Today he did a great job of showing off for the occupational therapist.  He opened and closed his hand and kind of arm wrestled with her too.  He got a new head rest for a trial today too.  This head rest has less support,  to help him build neck strength back up.  This afternoon his favourite nurse, Stacy, was working with him.  He was very cooperative with her.  He was much more alert in his chair today too.  He worked really hard trying to move his hands to touch things on his tray.  He only dozed off for about the last 10 minutes in his chair.  He was much more wiggly when he was up today too.  I was constantly putting his feet back on the footrests or asking him to put his head back on the headrest. 

James has been sometimes having a period before he falls asleep where he seems a bit agitated.  He moves his legs up and down the bed,   lifts his head off the pillow and grimaces.  Until a week ago he had the cuff up on his tracheotomy tube and could not make noises because air could not get past his vocal chords.  Last night when he seemed agitated I noticed that he was making a very quiet moaning sound and sometimes a crying sound.  The nurses said that they had not heard it.  Tonight when I went to say goodnight to him,  I heard him from the hallway!  He is still not terribly loud but remarkably louder than he was last night!  I got the nurses to come and hear him.  I feel better that he has a way to communicate,  even if it is pretty basic.  He is opening his right eye a lot more now too.  The nurses are feeling that his pupil in the right eye is responding quicker than it was as well.  Sometimes it appears that his right eye is trying to move with the left eye too! 

My Dad came to Victoria and took me to the book signing of "March Forth"  by Trevor and Debbie Greene.  I had prepared a note to give to them with a brief synopsis of James' story as well as my contact info.  I hoped but did not expect that they would be comfortable contacting me.   They were amazing,  not only are they comfortable but they gave me their info too.  Debbie said that she would ask the neuroscientist that they work with if he will see James when he is on the island in a month or two!  They wrote some words of wisdom in the book for James too.  "Stay the course and never give up! (from Trevor)" and "You can get your life back! (from Debbie)" What a night!  A huge Thank you to my dad for dinner and getting me to the signing and my bestie, Allie for prebuying the book for me!

Tomorrow  I present to the student nurses on our floor about what traits or behaviours that nurses do that are the most helpful to families and patients. 

This morning had an interesting start.   I was heading up to see James just like every other morning.  I did take note as I walked into the hospital that I was so tired that my sight was a bit blurry.  I got in the elevator and another lady got in with me.  She pushed 5th floor and I pushed 6th floor.  When the elevator stopped I somehow forgot about the other lady.  I got off and went to "James' room"  as I was walking through the ward I noticed that there were all new dry erase boards on the walls.  I thought, "Wow they were busy putting those new boards up last night!"  I walked into "his room"  and it was empty!  Then I went to the nurses station (I didnt recognise any of them)  and asked where he went.  They looked at me like I was crazy.  "James who?"  they asked!  Ok now I am getting a little worked up!  "He was there when I came to say goodnight last night!" I told them.  We finally sorted out that I was on the 5th floor instead of the 6th floor.  I was extremely relieved to find him right were I left him,  on the 6th floor!  Why do they make all the wards look the same!  

James was up in his chair for 4 hours again today. Yesterday he was up for 5 hours!  We are still waiting to find out more about the possibility of him transferring to St. Joe's hospital. I am hoping to find out tomorrow if St. Joe's are able to meet his needs. (tracheotomy care, physiotherapy, occupational therapy, and a room hopefully within ear shot of the nurses station.) 

Tomorrow night I am going to the book signing and release of "March Forth" and am excited to meet Trevor and Debbie Greene.  My dad is going to come down and take me to dinner and the signing,  and my bestest friend has prepaid for the book for me!

James' day today was like most of his days.  He sat up in his chair for 4 hours today.  His favourite nurse came to visit him today.  She was the first nurse that he made eye contact with and it was for her that he first opened and closed his hand.   He did a good job showing off for her today.  He opened and closed his hand for her when she asked,  and wiggled his toes for her.  She was very excited to hear that he is moving his arms, legs and head around a lot when he is in bed.  She reminded me that he wasnt doing that last week.

I went down to the EI office today to try to sort out my compassionate leave.  They sure dont make it easy.  They lost some of my paperwork that I submitted a month and a half ago.  They didnt let me know that anything was amiss with my claim though.  I almost went postal.  Not sure if I want to scream or cry.  Sounds like they may make me submit original copies of my Records of employment now.  Almost feels like it would be easier to just forget it,  but I have bills waiting to be paid.

I have been following the story of a soldier (who lives in Nanaimo now)  who sustained a severe brain trauma in Afganistan in 2006.  His wife was told that he would likely never wake up.  He is now learning to walk and has co authored a book with his wife about his experience.  The book is available on March 20th and they will be in Victoria doing a book signing on that day!  I will be finding a way to get there! 

James had a good day today.  I did range of motion exercises with him when he was in his chair  He opened and closed his hand for me when I asked a few times.  The nurses said that he did it for them too today.  They also feel that his responses are getting stronger and less delayed.  He smiled and gave a little laugh a few times today too.   He is doing a lot of spontaneous movement when he is in bed.  He moves his legs around a lot and lifts his head off the pillow. 

We had a planning meeting today.  The doctors say that James medical needs are at a point where St.  Joseph's hospital could meet his needs.  He is not at a point where he is ready for rehab yet,  and he could transfer back when he is ready.  I am looking foreward to going home but am scared about another change.  It is always difficult figuring out the routine and build the trust with the nurses.  We don't know how long it will be before the transfer though.  It could happen very soon or maybe not for weeks. 

Mark and the kids went back home today.  They will just come back down for visits.  I miss them already.

James did great today.  I took him for a wheel around the unit again today.  This time we did two laps and stopped briefly in the 6th floor lobby and looked outside and watched a few minutes of TV.  He has been squeezing my hand to tell me "yes" for a while now,  but he has not done it for the nurses yet.  Often when the nurses come into the room he half closes his eyes or completely closes them.  He has yet to make eye contact with them at all.  When he was at the end of his chair time today,  I thought he was overstimulated and he was pulling his head forward and putting it back and tremoring and moving his left arm alot.  When I asked him if he was "ok"  he sqeezed my hand,  and did not squeeze for " Are you tired?"  When the nurse came in I told her how I thought he was overstimulated but that he squeezed that he was ok.  She asked him to squeeze her hand and he did but he did not release when asked.  He did look right at her though.  She turned his hand over and asked him to close his hand,  and he did.  She asked him to open his hand,  and he did!  She had him repeat this 3 times!  Then wiggle his toes,  he did this too.  She called in another nurse and they had him do it again and he did!  This jumped him up the "Glasgow coma scale"  by two points!  I think that times when I thought he was overstimulated or upset,  he has actually just been trying very hard to make his muscles work!  I was so proud of him today!  It was awesome to see how excited the nurses were about it too.  Seeing their reaction made me feel like I can be excited and hopeful too!

When we went in to see James this morning he had his bite block taken off.  I have been nagging the doctors,  to take it off, but suggested that it be done when I was there.  When I asked when it was taken off the nurse told me last night!  He has done great without it in since last night and I am hopeful that he is done with biting his tongue!  The next day or two will give us a better idea,  but so far so good! He looks so much more comfortable with it out!

James had a pretty full day today.   He was visited by both his doctors,  physiotherapy and Occupational therapy.  OT started asking him to look at different shapes and letters in opposite corners on a peice of paper.  He appeared to be looking at what she asked him to.  He wouldnt fully open his eyes but did peak out of a half opened eye.  I was able to take him for a short wheel around the unit today too.  He was very alert and looking around for that!  He worked very hard at wiggling his thumb for me today.  He has been trying very hard to raise his thumb up for a thumbs up but has been struggling with it.  Today I discovered that if I let his fingers and thumb hang over the edge of his tray of his chair he can wiggle them easier.  He got really going and was wiggling his thumb back and forth really well!  He got very excited and didnt want to stop, but when he gets too excited about something his left arm gets muscle spasms and I had to work hard on getting him to settle down.  He is starting to smile a bit more often and occasionally he will actually give a little laugh.  He seems to find passing gas amusing and will either smile or laugh if he knows that you heard it.  What a boy! 
For short periods of time he will squeeze my hand for "yes"  when I ask him questions.  I need to make the questions count though,  because there seems to be a three or four question limit.  For a few days now,  I have asked him if he wants his glasses.  He has given me a fairly quick,  strong squeeze .  His glasses were lost in the accident,  so I called the eye doctor's office and ordered him new ones.  They were ready today in Courtenay today,  and I was going to have them purolatored down to Victoria.  When I called to make arrangements,  they told me that a staff member is coming to Victoria tomorrow and will deliver them to the hospital tomorrow evening!

I have been reminded that I haven't blogged in almost a week! I think everything has really started to hit me this week.  I had a rough couple of days.  Life is not going to be "normal"  for a long time, I am tired and I miss my big strong boy.  The last couple of days I have been feeling a bit better,  and I think that the key is really making sure I take time to care for me.  It is hard to remember to keep myself healthy both physically and spiritually!  My best buddy from Edmonton came out to visit and I am looking foreward to spending a bit of time with her. James had a busy couple of days.  He had visits from Grandparents and girlfriend.  He really seems to brighten up when his girlfriend comes to visit.  He gave Grampa George and Robin a smile when they visited.  He has had more frequent and longer aware times this last couple of days.  We have been reading a book to him about unusual animal friendships,  and he really looks at the pictures intently.   The staples from his last surgery should be coming out tomorrow. 

James had a good day yesterday.  His first couple of days post op were tough,  he was miserable and wouldnt look at us or really seem to engage much at all,  but yesterday,  he was back to smiling and has started cooperating with the nurses a bit more.  When they did his mouth care a few days ago he gave them a run for their money,  pushing them away,  and moving his head back and forth.  He still hates it,  but is starting to open his mouth when asked. 

His girlfriend came to visit this weekend,  his look softened as soon as he saw her and he wouldnt stop staring at her.  He even have her a little smile when she did a silly dance around the end of his bed to see if he would track her. 

Two of Mark's buddies from our early years came to visit yesterday and James gave them a great smile when they walked in.

James had his surgery to replace his bone flap on his skull that was removed for his original surgery.  He finally went to surgery at 11:00pm last night.  It all went great and he was back on the ward by 1:30 am.  He has a nurse assigned to just him for the next few days at least,  so we can make sure that he doesnt bite his tongue again.  ( and so his poor mom can sleep)  The last two nights he has bitten his tongue at 9 at night,  I am thinking that by then he is just tired and overstimulated.  It is possible that they might just wire his jaw for the next couple of weeks to protect his tongue and revisit using his mouthguards then. 

I went to see him this morning and he squeezed my hand with his right hand when I asked him to,  and smirked when he had a loud pass of gas!  I had a good talk with his surgeon this morning and told him that we are prepared to figure out a plan to keep James in Victoria for his recovery.  The best resources for trauma patients are here in Victoria. 

We recieved some lovely cards from some of James'  friends in Ohio yesterday,  I put them on his wall in his room with the rest of his cards and the origami from the young men's group.

Well,  James finally moved off of ICU yesterday!  Another up of the day was,  that he smiled a crooked little smile at me,  and then he did it for his silly nurses too.  They were teasing each other and he thought that was pretty entertaining.  I

I ended up sleeping at the ward with him last night though.  He bit his tongue again in the evening,  and I was really not comfortable with the staffing levels.  Today though,  I told them how I was feeling and they brought another nurse on to be with James only for at least the next 24 hours,  maybe longer,  then we will reassess the situation. 

There was suposed to be OR time for the surgeon to put his bone flap back in yesterday,  but it didnt happen because there was a surgery in before him that ran overtime,  the surgeon is hoping for OR time today,  but it may not happen until Friday.

Mark and I (with James nurse) got to take James off of ICU for a little walk today!  Nothing too exciting,  we took him to the hospital chapel.  We parked him in front of the window and looked outside and chatted.  He sat in his chair very comfortably for 3 and a half hours today.  I got him to look at me quite a lot today,  and today I could see him focussing on me.  It was pretty cool.  Tonight when I said goodnight he was really sleepy,  but when I spoke to him he still turned his head towards me. 

James spent 5 hours in his wheelchair today!  He had about and hour where he was doing a lot of moving his legs and exploring the seatbelt and I gave him his stuffed ladybug that his girlfriend bought him. He was moving it around on his lap and picking it up and exploring it.  It is the first time that I have seen him take that much interest in something for that long! He is still on ICU and it sounds like the plan is to keep him there until Tuesday or Wednesday.  A dentist came and made moulds for bite blocks to stop him from biting his tongue.  He brought the bottom one yesterday,  but he is still able to bite his tongue,  just not as hard.  So the top block will be made on Monday and hopefully that will take care of that issue.  They are clear peices that mould to his teeth,  and look a bit like a retainer.  

I finally met an ICU nurse that I dont like.  I had issue with her talking down to me and glaring at me last night. By the time I left ICU to go to bed last night she was much more civil,  but I was upset that she was rude in the first place.  I spoke to the head nurse today and she will have a quiet word with her tonight.  I feel better now that I have acted on the situation.

James almost made it off ICU again today,  but alas,  today was not the day.  The plan was to wire his jaw today and have him move upstairs afterwards.  The specialist came to see him last night and was not  sure that wiring was neccessary.  A dentist came to see him today and he feels that he can make a dental appliance that will prevent him from biting himself and hold his jaw a little bit open so that it is possible to do mouth care.  Only problem,  the appliance may take a week to have made!  It sounds like they may wire his jaw until the appliance comes....we will see what tomorrow brings. 

Today James kept reaching for his monitor leads on his chest and his iv line.  Definetely purposeful movement,  so that is a good sign.  He seemed a bit agitated and scared today too,  also good, but hard to deal with as a mom.  It has been a long, hard day, but all in all I think he did well today.

James almost made it off of ICU today....there is even a bed sitting in the hallway with his name on it to go up to the ward .....and then he bit his tongue again.  He should stop biting his tongue as he becomes more aware.  For now it looks like he may have to get his jaw wired shut until this passes.  He will be a few more days in ICU until they are sure that this problem is resolved. 

On the up side,  he sat in his wheelchair by the window for 3 hours today.  The nurses are letting him listen to the radio during the day.  He seems to enjoy it.  When Sarah and I went to say goodnight to him tonight he was listening to the radio and he started to really move his feet around,  when the song stopped he stopped too! 

James sat in his wheelchair for two hours again today.  He may get to stay in it 3 hours tomorrow.  He had his first session of range of motion physiotherapy today.  I am not sure it was very hard work though because I think he slept through half of it!  He was pretty sleepy this evening because he had some pain control and anesthetic so they could change his trach tube and do some mouth care.  When I went to say goodnight he was back off the ventilator and resting well though.

 Mark pointed out to me today how every doctor that he has had has been there exactly at the right time for James.  The ICU doctors rotate out every Monday.  The doctor that was on when we first arrived is a female doctor and a mother herself.  I really felt that she listened to her intuition and was very gentle with us when we were feeling so terrified and vulnerable.  The next doctor who replaced her has a neurology background and some good experience behind him and was able to give a little hope when we desperatly needed it.  This weeks doctor was very approachable and reasured me when I needed to hear it the most that if this was his son he would make the same decisions that we were making for James.  The doctor who is coming on tomorrow is a respiratory specialist.  The peice that is keeping James on the ICU right now has to do with the next step of starting to breathe through his mouth and nose again.  I am in awe of all the peices that have fallen into place for James during this trying time.  The right people have been in the right place at the right time.  From the first responders at the scene,  to special people who came across the accident and followed their hearts,  to the doctors and nurses , and the countless family and friends who have sent prayers and thoughts and meals and fasted for James and our family!  There have beens so many tender mercies and small miracles so far along this journey and I am sure that there are more to come.  James has come an incredible way in the two and a half weeks since his accident but has a very long, challenging road ahead of him.  I am so thankful for the incredible supports that our family have! 

Pretty exciting day!  James sat in his wheelchair by the window again today,  but today he seemed a bit more alert.  He looked at me and his Dad and when the nurse asked him to do a big wiggle of his foot if he wanted to listen to music,  he wiggled his feet!  She is going to set him up with a radio so he can listen to it a bit when he is awake.  He will probably be on ICU a bit longer because he has been biting his tongue when he coughs.  The doctor feels that that will settle as he becomes more awake. 

I am hoping that James will get to be in his chair a bit more tomorrow.  He looked like he was enjoying it today.  Doesnt look like he will get sunshine tomorrow though. He had lots of visitors today.  When we went to say goodnight tonight he was moving his arms and legs a lot.  He keeps wiggling a leg out of the bed,  so I think he will keep his nurse hopping tonight!  He is opening his eyes a bit more,  but not tracking yet. We are seeing a bit more movement every day. 

James sat in his wheelchair by the window today.  We hope that he may move off ICU soon.  He sat by the window and had the sun on his legs for a couple of hours today.