Dustin LaFortune

Archive for the ‘Health Updates’ Category

Thank you for all the emails looking for updates and wondering on how Dustin is doing now. Here is a little something that his mom got to me a few days ago in-between life happening:

I took Dustin for his pre-op physical exam today. He’s healthy and “fat” (255 lbs). LOL! No medical or health issues. Dustin laughed all the way to Wendy’s to buy his ‘Baconator Combo’. It seems he is quite amused by his weight because he describes anything OVER 250 as fat. After much chuckling, he said the first order of business was to sit on his brother Ryan. Next, he said that if anybody gave him a hard time about his weight, he would ask for counselling and allow some pretty therapist to pat him on the shoulder and offer him a kleenex to wipe away the tears (of laughter). He was a total brat today but in a good mood after a sleepless night spent talking about what happened to him. Anyway…Dustin is healthy is very pleased with himself.

We also got back from the plastic surgeon’s office. Good news and bad news: the liposuction to transfer fat from Dustin’s butt to his lips has to happen before the full flap grafts and facial reconstruction. So, between now and Sept. 9th, Dustin will go into hospital and have his facial scars erased. In September, the surgeon will pull skin from the inside of Dustin’s top and bottom lips then inject fat. As soon as his mouth is sufficiently healed, he’s goes back into hospital for ear surgery no.#2 (more cartilage removal and his ears will be ’sewn’ to the side of his head). Then the dental and plastic surgeons will begin the serious reconstruction.

Surgeries still to be done:

• bone grafts to reconstruct and repair Dustin’s nose
• bone grafts to reconstruct and repair Dustin’s eye orbits
• bone grafts to reconstruct and repair Dustin’s cheeks and jaw
• micro-surgical procedure to fix muscles and ligaments
• two to three more operations on Dustin’s ears
• complete dental reconstruction (extractions, crowns, pivots, veneers)
• full flap grafts (3 surgeries) to reconstruct lips
• full flap grafts on Dustin’s legs

Dustin has also been very active in the following activites:

• adventure therapy (kayaking and climbing)
• Disabled Sailing Association
• Tai Chi
• Trauma Counselling
• working daily/weekly two ABI (Acquired Brain Injury) Support Workers

Dustin is also attending classes at The Victoria Brain Injury Society. His mentor  meets with him (one-on-one) every Tuesday. Dustin will be featured on their new website and he’s represented VBIS all over the city.

He is also wanting to get the number of supporters to his NSAT page up over 1000!!

(This is an update compiled from a series of short messages Renee was able to put together in-between work and caring for her boys – Jodie)

The doctor reviewed the neuropsych reports from Calgary & Regina hospitals and all the assessments administered while Dustin was at Wascana. Not good.

The doctor had Dustin do a few special puzzle and chart games, asked questions and then had a regular counselling session (just with Dustin) followed by a short ‘debrief’ to process issues and set up treatment plans and trauma counselling schedules etc…

When we got home, Dustin ate and went right to bed.

Somebody sent links to all the really nasty online stuff to Dustin through his new FB page. He read everything. It was brutal. Now, he is really, really angry. He doesn’t sleep. The PTSD episodes are way more frequent and more easily triggered which often translates into physical pain etc…

Dustin attends the Neuro-rehab Brain Injury Clinic for physio, Occupational Therapy (OT) and speech. He also goes to the Brain Injury Society for Art Classes and a ‘peer group’. He has started a class called ‘Brain Injury 101′.

Dustin will NOT (refuses absolutely) do his ‘at home’ physio exercises. This includes the ‘mouth stretches’ which are very painful but necessary. He needs to reach a certain ‘level’ before the reconstruction can start. Dustin wants to have his lips and ears done ASAP but until the soft tissue is more elastic and flexible, the surgeon won’t do it. In the meantime, we are trying ‘alternative’ stretching exercises: getting Dustin to open his mouth and take a bite of a Big Mac or other large kind of sandwich.

He is registered and uses ‘HandyDart’ (which is not always very handy!). The bus picks him up and drops him off at the destination. Dustin still cannot get around without direct supervision. He is easily disoriented, distracted and forgetful.

Ryan visits one day each week to hang out. They do touristy stuff and/or go to a movie together. Once they went to a pub to have a beer and watch Monday night football. Another time, they went for a ‘hike’ and another time, they went to Undersea World.

I do all the ‘daily living’ activities with Dustin. We make endless lists/charts and practice things like grocery shopping, cooking, laundry, planning outings and activities, bus training, money management etc… Dustin is actively involved in every aspect of his life. The short term memory deficits are really becoming apparent. Every single time we start a task it is like the first time. He doesn’t retain much – although he has mastered MAKING COFFEE! During the day, Dustin requires ‘naps’ to alleviate the mental fatigue, confusion, frustration and depression. His emotional cycles can be interrupted (or re-directed) fairly easily with music and/or ‘FUN’. The repetition patterns are harder to break.

We spend a lot of time at our support/respite home/friends too. Dustin loves going over to their house because he gets to feed the swans and watch a big screen TV.

We have been working on Dustin’s victim impact statement. The detective from the Calgary Major Crimes requested that we complete the statement as soon as possible. It’s taking a long time to complete because just about everything triggers memories. I listen to Dustin talk about what happened and write down what he says (according to the instructions that came with the package). It is a miserable, time-consuming ordeal. I always wait for Dustin’s ‘lead’. He says something like: “Are we finished the statement yet?”

Needless to say, every contribution to the statement results in hours of counselling with the psychotherapist and days of grief for Dustin. Then there are more questions, more pain etc… One of the ‘easy’ parts of the Statement: Dustin is making a list of songs/videos that describe how he feels about what happened and how the experience of being tortured affects his life. He spends hours listening to lyrics trying to find exactly the right words to communicate his feelings.

On a positive note: we are probably picking up the dog (disabled assistant) sometime this week. He will be beside himself with happiness. CUTE is one of the best bandaids. Then Dustin will have a new activity: going to dog school so he, himself, can train the dog.

Dustin is a full time job.

I’ve applied for Case Management (through the Brain Injury Society) and some ’supports’ but Dustin does not qualify because he is not yet a resident of BC. Without BC medical (the application was submitted but there is still the 3 month waiting period), Dustin cannot access anything not covered by Alberta medical.

Once Dustin has a BC medical number we can try for PWD (person with disability) designation and then start the ‘eligibility’ and application process. The PWD will cover very basic stuff . Before I can even start filing applications, I have to find a family physician. ha! ha! ha! ha! Dustin has an entire team of specialists but no regular doctor. I spend at least an hour a day on the phone calling doctors and asking if they would accept a new patient. I have other people helping. We work from the phone book and from lists released by the Health Authority.

Dustin now has the ’special bed’ prescribed by the doctors in Saskatchewan because Dustin had numerous spinal fractures, broken ribs, surgical wounds, skull and facial fractures etc.

I’m currently ‘negotiating’ with another neuropsychologist who specializes in trauma and brain injuries. I hope he agrees to take Dustin on as a client. The other Dr. is attached to the hospital rehab program and this Dr’s availability is limited. Dustin needs what he needs when he needs it – not only during business hours and regularly scheduled appointments.

I really wish Victim Services would provide some counselling for family/supporters. I know several people who are really struggling and could use some help right now.

Hello dear Guardians – please accept our apologies for the long delay in updates. Between all the moving, surgeries (mine), doctor’s appointments and lack of regular access to computers and the internet (both Renee and I), it’s been waaay too long.

However, the dust is settling, somewhat, so there will be a longer post soon.

The long and the short of it is: Dustin is doing so, so well right now. He’s been able to graduate from using a walker to simply using a cane! Various physio and neuro programs have been started; he’s one very, very busy man!

I know I posted a while ago about a video that was to be put up; it hasn’t for the main reason that something larger and more TV-related is coming down the pipe, so we were asked – in the interest of not diluting the content/impact – to hold off on publishing certain things, which included the videos I took (for now…).

I’m working with Renee on a more medically-themed update as soon as we can. Between all the paperwork, work and caring for 2 sons who need supervision, she’s putting in 18-hour days most days. I get tired just listening sometimes!

Thank you for your continued well-wishes – Dustin has been peeking when he can, and it makes his day.

Cheers!

Last night, Lynn wrote to friends and family about what it was like spending all that time with Dustin, supporting him as he heals, remembers, comes to terms with what happened and learns to become an independent man again. When I read this, I was hit with the stark reality of what Dustin is going to need for years to come what his support circle will face. Here are Lynn’s own words on how it felt:

—=:=—

I just got home from Regina. The trip was great, we had a really good time doing a bunch of “firsts” since this all happened. It took about two days before he fell into pieces. Same goes for me. We took turns. Renee said it perfectly: this trip was my reality check. It’s not all dreams of fishing and sitting around with friends having a good time anymore. We have hit a wall, the recovery is slower now, the hard stuff is surfacing and I didn’t realize how hard this was actually going to be. I did, but, until you’re in it, you just… don’t know.

This was the hardest trip yet. It is not going to be easy for any of us. This visit was a HUGE wake up call for me. He made leaps and bounds so damn fast in the beginning that now that it’s starting to slow down, it’s tough. Not to mention mentally draining and exhausting with feelings of horror, helplessness, sadness, anger…

When I think of someone taking care of him 24/7 it’s too big to fathom. I was only there for 4 nights/5 days and can honestly say that NO ONE should have to go at this alone. This will have to be a group effort, everyone pitching in, driving him back and forth to places. I DON’T THINK IT’S HEALTHY FOR A LONE SOLDIER TO DO IT ALL. Dustin is repetitious, sad, happy, needing everything. When he does do things on his own, you have to watch and be there to make sure he doesn’t fall; this is not a “one home/person” job and it’s definitely tougher than I ever expected it to be.

In all honesty, I am exhausted to the MAX. I’ve cried, I’ve smiled, I’ve gotten frustrated, I’ve eaten, I’ve not eaten. It’s hard to explain, but I just don’t think one person can do this. He is going to need a team of caring people around him.

July Visit with Lynn

I just got this message from Renee:

I spent hours on the phone with Dustin today. He gave me an item-by-item medical update for the website. (Yes, he saw it!)

Here it is:

This update comes from DUSTIN himself:

Weight as of July 19th: 164 lbs.

I passed the video swallowing test today. No more nectar thick liquids! I still get to have 6 coffees unless I sneak more.

I’m using a two-wheeled walker to do rounds of the unit twice everyday. Still wobble sometimes, still get dizzy sometimes but no wheelchair! When I have nothing to do, the nurses make me walk. If I concentrate and breathe, I don’t think, I just walk looking at my feet.

My memory is coming back. It sucks. The counsellor helps me a lot. She smudges with me and she brought her little dog to visit.

I cooked spaghetti for my OT (Jodie’s note: Occupational Therapist). I wrote everything down but I still forgot to boil the noodles. She ate the spaghetti. Next time I’m going to do Chili for Lynn.

I can stick 11 tongue depressors in my mouth. That’s 2 more than the last time so my mouth stretching exercises are improving. It still hurts.

I have an art assignement to draw birds.

I answered questions all day for the neuropsych assessment doctor. The puzzles were fun but the questions were weird.

I watched my YouTube video. I was so skinny. Good thing I have physio everyday. Soon I want to walk by myself. My website is so cool. I want to make another video to say thank you.

Hi all! You may have noticed that there hasn’t yet been an update from the normal Wednesday teleconference calls. This is because a normal one didn’t happen last week. However, Renee did say that most of the team members were spoken to individually, so she’ll have some updates for us soon.

Teleconference July 07, 2010

In Attendance:

Dustin
The doctor
Physio
Occupational Therapist
Speech Therapist
Dietitian
Nursing
Mom

Goal #1

Transfer to Winnipeg: The doctor has still not been able to do a proper consult with his Manitoba counterpart (summer vacation schedules). The social worker is handling the application process. The ‘transfer’ discussion will occur separately from the medical updates.  Dustin reported that the Social Worker helped him fill in the forms so he could apply for the residential ABI program.

Physio

Dustin’s new goal is to walk independently using a two wheeled walker because it provides support and stability. So far, Dustin can manage 160 metres, including turns, before he becomes tired and shakey and starts crossing his feet.  There is no indication that Dustin can or will ’self-limit’.  He must be encouraged/directed to ‘STOP’, rest and resume.

Dustin can also walk short distances without the walker but he remains at 100% risk of falling. This is a brain injury issue (balance, perception & judgment, dizziness) not a strength problem. Now that Dustin’s weight is approaching ‘normal’, the wasted muscle tissue is building rapidly with very little effort.

Dustin has been practicing on the stairs and walking between the rails. If he holds on to the rails he can walk up using alternating feet. Coming down the steps he requires support from one person to steady him and ’spot’. (ABI perception issue and balance).

Occupational Therapy

Dustin can dress and perform all personal hygiene tasks independently with cues and prompts. The Aide is in the room to ’spot’ and provide reminders but does not assist with tasks. Dustin can sit on the edge of the bed to do part of the dressing routine as long as there is a person standing beside him. Dustin said that he can even manage to put on his socks and shoes when he is sitting in the wheelchair.  24/7 supervision (not assistance)  will be required for a long time.

Drooling is still a problem because of swallowing, mouth, face and dental issues. The stretching exercises (up to nine tongue depressors) are working. Speech and flexibility have improved but aspiration is still a concern. Dustin is aware of the drooling problem and wipes his mouth frequently. Sometimes he still needs prompts.

The last swallowing assessment (on Monday or Tuesday) did not result in an upgrade. Dustin remains on nectar-thick liquids and a dental soft diet. He can have water but there is still a lot of coughing unless he uses a straw.  The staff are aware that Dustin is ‘cheating’ so family should be alert to ‘coughing’.  This means that liquid has gone into his lungs.

Dustin started Art Therapy and is loving it! The therapist is blown away by his talent! Right now he is drawing whatever he wants but soon, the time will be spent doing therapeutic exercises to help process memory, cognition, emotional and psychological issues.

Dustin will not relinquish the iPad so it is being used by neuropsych to work on memory, cognition, safety, judgment and common sense decision making.

Diet, Nursing, Medical & Miscellaneous

Dustin weighs 69 kg. (152lbs), up from 64 last week! The chart to record snacks and extras is helping Dustin remember and by his own admission, providing an easy way to scam the staff into giving him more snacks. (Of course, the staff are aware of this and have no problem giving Dustin extras because they have their own way of scamming him into believeing that decaf is real coffee! LOL!) The point of the chart is to help Dustin remember and it’s working.

He is on a normal balanced and caloric diet (approx. 2500 per day plus extras) with ‘healthy snacks’ and ‘cheats’. Dustin gets daily vitamin supplements and he is by every measure quite healthy now.

The staff listened to Dr. ____’s recorded notes (nobody could read the chart notes) about the possibility of plastic surgery to reconstruct Dustin’s face. There is still too much damage to soft tissues and not enough flexibility. With another month of healing and stretching exercises, Dr. _____ will be able to start the lengthy series of reconstructive surgeries necessary to rebuild Dustin’s mouth, ears and face.

Dustin had the neuropsych assessment. The results are still not on the chart but Dustin said that he was asked a lot of questions, played some memory games and had his ‘reaction’ to certain scenarios ‘checked’. Dustin said he was confused a lot of the time but he believes he did his best because most parts of the tests and puzzles were ‘fun’ to do.

The most pressing issues in Dustin’s care involve safety, judgment, common sense and cognition (all ABI issues). Dustin still requires supervision at all times. Gradually, more opportunities for independence will be provided and the results monitored. The really ‘HARD WORK’ (forever) starts now.

Participants:

Doctor
Recreation Co-ordinator
Social Worker
Nursing
Speech Therapist
Physio Therapy
Renee

Goal Review:

1. Transferring to long-term ABI facility

The Social Worker is working on the application process and the doctor is consulting with the neurophysiologist soon. Discussion, planning and transportation will happen at a later date.

2. Personal Care

Dustin still requires assistance with dressing but he is improving. Balance and core strength issues are still a concern.

3. Physio

Dustin participated in a ‘Walking Assessment’ last week. He scored 30 out of 66 which according to the scale still puts him at 100% risk of falling.

Dustin is still unsteady. The physio program is working on core stability and building trunk strength using exercises, the help of support rails and lines on the floor. Dustin can walk 25 metres around the room, with the assistance of one person. He still moves to the right and has difficulty placing his right foot. Dustin is very cautious and easily fatigued and does not self-limit.

Dustin practices walking using the support bars and one person ’spotting’. He also practiced walking up and down stairs. Dustin can walk up 5 steps, using alternating feet if he is holding on to the rails but he can’t come down unless he is assisted. With help, Dustin goes down, one stair at a time, placing both feet on each step.

Endurance is a problem. Dustin is easily fatigued and needs to rest between activities. He will not (cannot?) self-limit or rest so the performance level deteriorates.

4. Diet

Dustin is limited to six (regular) cups of coffee per day. He can decaf between meals or with snacks. He is encouraged to drink water or nectar-thick juices instead.

Dustin has a chart in his room to record extras. This is helping him to remember that he’s eaten and what he’s eaten.

The dental-soft diet and nectar-thick liquids will continue for now.

5. OT/Speech

The plastic surgeon examined Dustin. Nobody can read what he wrote on the chart but Dawn said that he suggested some stretching exercises using tongue depressors.

6. Recreation

Dustin starts Art Therapy next week. He is really looking forward to it and is already drawing between therapy sessions. The staff are impressed with his talent and artistic ability. There will be an evaluation to determine what other activities would be suitable.

7. Cognition

Dustin has exercises and quizzes to help with memory, organization and orientation.

He is also looking forward to finally having his iPad and using it as part of therapy.

Teleconference call – health update

Who was there:

DUSTIN
Neuro – ABI
Occupational Therapist
Physio
Dietician
Neuro RN/Unit Mgr.
Program Co-ord.
Social Work
Renee (Mom)

Goal Updates

Physio:

Dustin continures to work on standing and walking. There was a ‘balance test’ to determine if Dustin could use a two wheeled walker. His co-ordination, balance and core strength must improve a lot before the wheelchair can be replaced with a walker. Core strength and foot placement are the biggest challenges. To help with this, Dustin will be referred to another therapist, who will do a special exercise evaluation using ‘runway lines’. If Dustin can walk with support then an exercise/practice regime (2 X wk.) will be incorporated into the physio program.

Dustin continues to do ‘laps’ with only one person to support him. Endurance has not moved beyond the 5 minute mark so the staff are going to walk with Dustin to further and more interesting parts of the building. They will also try to walk outside (weather permitting).

Occupational Therapy:

Dustin’s balance while sitting is still “iffy”. When sitting on the edge of the bed trying to dress himself, one article at a time, Dustin still gets dizzy, leans to the right or falls forward if he’s not assisted. He still needs help and support with everything except shirts/hoodies with open fronts. Dustin can’t do socks, shoes or pants yet. More practice will be built into ADL (activities of daily living) and the staff will get Dustin into the wheelchair. It is easier for him to dress himself when he is in the wheelchair which has belts and side/back supports.

Another video swallowing test was conducted today. Dustin still has trouble with thin fluids and dry foods. He can’t eat crackers, cookies etc… or drink plain water or coffee. The dental soft diet will continue and liquids will be ‘nectar thick’ consistency until the next test. The inability to swallow is a combination of brain injury and damage/trauma to thyroid cartilage.

Dietary/Nutrition:

Dustin weighs 134 lbs. He is putting on ONE POUND PER DAY! He will be allowed unrestricted calories for another 30 days. His doctor said that because of the starvation, the deprivation and the brain injury (Dustin still forgets that he’s eaten) the weight gain will stop naturally when Dustin’s body reaches it’s ‘normal’ pre-trauma weight. The doctor thinks that Dustin should weigh between 175 – 200 lbs. based on his build. As Dustin approaches his normal weight, more emphasis will be put on HEALTHY food and snacks. The dietician already suggested that Dustin eat bananas between meals (instead of pudding unless it’s Ensure pudding). When Dustin is more physically able to exercise, serious work will begin to build muscle (his muscles are still wasted and his body is storing energy as fat) which will burn off some of the calories. In one month, Dustin will be put on a healthy, normal diet and eat the proper amount of food. Dustin will be given ‘nectar thick’ flavoured water between meals.

The staff are going to have Dustin enter everything he eats and/or drinks on a special chart. He can place ‘check marks’ beside foods/beverages he’s consumed. There will be blank spaces for him to write down all the ‘extras’. The chart will help Dustin remember that he has eaten and what he’s eaten etc…

Medical:

Dustin cannot feel when his lips are open or closed though he does feel tingling pain around his mouth. He cannot make the “M” sound. Dustin cannot open his mouth wide enough to get normal sized bites of food inside his mouth, nor can he close his mouth enough to keep the food inside. Dustin’s teeth are a mess and still quite painful. Stretching exercises may not work because of the damage to Dustin’s jaw and cheeks. There is definitely tissue damage.

The doctor is going to have a dental surgeon visit Dustin. The doctor is also going to consult with the other doctor from plastics. Dustin might get some of his teeth fixed and a bit of reconstructive surgery on his face and lips (SOON) so that he can eat properly and the ABI exercises/goals can proceed. Dustin’s jaw does not function properly. If Dustin’s lips can be reconstructed then he will be able to eat and talk better.

The comprehensive neuropsych assessment is soon. When done, it might be 2 weeks before the results are available and written on the chart.

OTHER:

A referral has been made to the Recreation Therapy and Art Therapy departments. Dustin needs more fun and productive things to do during the day until he can handle longer periods of physio and Occupational Therapy. Dustin was really excited with the prospect of Art Therapy and having access to studio materials. The staff would like Dustin to engage in some social (fun) activities too.

Dustin still has a lot of orientation problems and memory problems which prevent him from doing things independently. He gets lost and/or forgets where he was and/or where he was going. Dustin is able to navigate around the floor by himself because there are staff to prompt and remind him but he is still not oriented enough to go elsewhere in the building. This is a safety/judgment issue as well as an ABI issue.

Th Psychologist is working with Dustin on trauma issues. They will try to have her at the next meeting.

Dustin is trying to transfer from bed to wheelchair independently but he often forgets to put the brakes on the chair. The RN said they are going to make Dustin a list to follow which includes calling a staff to watch him transfer (just in case).

PROGRESS:

The staff are pleased with Dustin’s progress. He’s about ‘average’. The more involved the therapies, the better idea the staff have of how far Dustin has to go before he can function more independently. As the therapies become more involved, it is normal for ‘deficits’ to be highlighted. Deficits result in ‘goals’ that Dustin can work towards. Sometimes Dustin ‘over estimates’ his progress. (This is not a bad thing because Dustin hasn’t hit the wall yet. His progress is slow but steady).

Wednesday Teleconference

Participants:

Dustin
The Doctor
Coordinator
Speech Therapist
Physio
Occupational
Nursing
Social Worker
Renee

1. GOALS
Dustin’s goal: to move back to Winnipeg

Rehab’s goals:
- walk independently
- dress independently
- independent personal care and hygiene (teeth, hair, shaving etc…)
- articulate words better
- work on memory & cognition
- get eyes checked

2. PROGRESS

• Dustin walks for a number of 5 minute sessions each day.  He is still wobbly and requires support but there is improvement in ’strength’.  Once Dustin is able to tolerate longer periods of walking, physio will start working on stairs and put Dustin on an exercise program 2 – 3 times per week.  During the teleconference, Dustin wanted to show everybody that he could walk so he stood up and with the support of two people, Dustin walked across the room and back.  (NOTE:  The Doctor  mentioned that Dustin always leans/moves/walks to the right even if there are obstacles in his path).
• dressing/undressing and personal care  are built into to morning and evening routines.  Dustin still needs help with pants and shoes (balance, flexibility and ABI issue).
• Speech therapy is helping Dustin make ’sounds’ and find new ways to articulate words.  Another video swallowing test is scheduled for next week.  Until then, Dustin remains on a double portion dental soft diet with thickened liquids.  Tomorrow, the therapist is going to do a ‘manual’ bedside swallowing test to determine if it’s okay for Dustin to have coffee (which he wants badly!)
• Neuropsych is going to start the memory and cognition exercises next week.  They asked Dustin about his education and he told them he finished grade ten but then yelled out “..but I’m going to finish grade 12, I promise Mom”.  Everybody laughed.
• Dustin gets dizzy a lot.  He also lean/moves/walks and drives his wheelchair to the right.  He complains of double vision and/or blurry vision in his right eye.  The Doctor would like to determine if this is a neurological (ABI) issue, a vision issue or related to facial fractures (or a combination of all).  The Doctor will have an ophthalmologist examine Dustin.
• Dustin was asked how he liked where he was and he said “I love it here.  I feel so safe.  Everybody is nice to me so I’m going to work really hard to get better.”
• the staff reported that Auntie visits, takes Dustin outside, talks, hangs out and is excellent company.  Dustin looks forward to her visits.
• Blood pressure:  NORMAL
• Weight: 58.1 kg or 128 lbs.