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Update April 12, 2011

by ramgbs

Today is Bob’s birthday!! What a fabulous day he has had. An update will be posted about the past 6 weeks and boy there have been some exceptional changes with a few challenges.

I will be visiting Henderson Recreation with a handicam to tape any comments, inspirational words or best of all questions for Bob about your exercise regime…mental challenges are good for him and he always has some good ideas or at least something to say!

I will visit Henderson during the days/times that Bob would usually work  – need to confirm schedule but will definitely be there Sat morning, April 16. Change of plans – just confirming that will probably be the week of May 1 to visit Henderson and Oak Bay.  Check this website or with rec center for any updates!

Bob has had a few visitors and it has been wonderful. Each of them have contacted us via email or have called Ann (if they know the number) as Bob’s physio regime and other activities vary throughout the day. So if interested in visiting, please make sure you email us or phone Ann.

Thank you for your continued support and phenominal words for Bob!!!


Update Jan 1 – February 28, 2011

by ramgbs

It’s been 4 months since Bob entered the hospital.

He continues to improve and is located in ICU- challenging his ventilator and paralysis. The improvements have been small and at times difficult to communicate with everyone because the syndrome gives a little and then takes a little. To share one week that Bob is moving his arms and then the next week he isn’t is why I have waited to post anything, but there has been some definite progress that I would like to now share.

The first couple weeks in January, Bob was shuffling his hips and shaking his legs but his arms decided to slowly stop moving and by mid-January he couldn’t lift his arms or move his hands. Definitely devastating for him as this was a sense of freedom as he had been able to touch his face and move his fingers comfortably since the swelling had finally gone down.

His breathing had started to become a bit difficult and he resorted to short stints off the ventilator. He was tired but continued to push himself to try. The RTs tried again to take him off the ventilator but his secretions were so extensive that they couldn’t clear his lungs quick enough to get him stabilized so he could have the Passy-Muir valve on to try talking.

Bob has had a lot mucous plugs in his lungs, whereby he isn’t breathing easy and can’t rattle the mucous free from the lungs without either Nurses or RTs putting their hands on his chest and shaking him extremely hard, or having constant suctioning by manually forcing a long tube down through his trach to expel the secretions.  In order for the trach to work so Bob can breathe, there is a cuff that is situated around the trach and it is inflated so it doesn’t allow any secretions (saliva etc.) or air to come through the mouth into the lungs. However, when this is deflated, the secretions that have accumulated above the cuff in his throat have a tendency to drain into his lungs rather than his stomach. Remember he can’t swallow either based on how much the cuff is inflated. 

But after another attempt on another day with the Passy-Muir valve, Bob was able to speak for a few minutes. It wasn’t exactly his voice, more like a static like sound but the first words he expressed, several times, was HAPPY, HAPPY, HAPPY (ask Bob about this as this was a response to a question he asked of a monk in Bali). He did the alphabet but was over pronouncing letters. He was thrilled to speak and then all he kept saying was the alphabet. It was truly a happy moment and exciting for us to hear him.

As we have watched Bob we can’t imagine what he goes through. Imagine if for several months you couldn’t speak, you couldn’t move your body, you couldn’t ask questions or share your thoughts, your excitement, your uncertainty, your frustrations, your fears ….and you had to let everyone figure out what you wanted or needed – they decided for you! I’ve watched Bob each day, a few hours, every day (I have missed very few days), and how he has stared at the clock which has been an enemy and a gift. I’ve seen his disparity and his frustration to be understood. I watched him having to mentally let go because his thoughts would not become words. Besides the physical challenges, he has had to move through such emotional challenges with no way to exhale – can’t scream as he has no sound, can’t walk away  – except closing his eyes and finding a way to centre himself and deal with solitary confinement.

Sadly Bob just wasn’t ready to speak as his tongue was swollen and he had limited spatial awareness. The Speech Therapist said that the muscles in his tongue and at the back of the throat had too much nerve damage (50%) and we would have to wait for the nerves to regenerate. So needless to say Bob would have to wait longer before he could say anything.

By late January, the Speech Therapist began visiting him more frequently and continuing to test his abilities. Some of the tests were trying to see if he could swallow ice chips, getting him to manipulate his tongue and finally, le piece de la resistance….was hearing two men sing ‘row, row, row your boat’ together. I never laughed so hard. Bob could only say 3 words and then need to breathe but what a great feat. The Therapist felt he was improving slowly but he felt that it would take much longer. Bob wasn’t happy about this and I sensed his determination kick in as he began his path to proving otherwise.

Throughout January he dealt with lung and bladder infections, concerns from x-rays, the body losing weight and then attacking and trying to deplete his proteins but – he has conquered and is healing fine. He continues with boots and splints supporting his legs/arms during the night; edema gloves (lycra material) worn all the time to control the swelling; many pillows supporting his body including to elevate his hands; daily routine with physio for 1 ½ hrs in the morning, then sitting in the wheelchair in the afternoon for 1hr to 2hrs. He tested his ability to dangle (sit) on the edge of the bed progressing from 2mins up to 10mins – note: the bed is an air mattress which is challenging enough! He still was improving on his ability to shake/move his hips and legs.   

January was a tough month as Bob dealt with challenges like exhaustion, varying lengths of time on and off the ventilator, few opportunities to speak and frustration with the lack of movement with his arms, hands and feet. In the last week of January the Drs told Bob that he could expect to be in ICU for 5-9 months and that his diaphragm wasn’t strong enough and he had to rely on the ventilator to give him the ‘extra’ support. They said that they can’t determine where the nerve damage is and that nerves only regenerate 1 millimeter a day therefore the process is long and undetermined. Not very encouraging for Bob and very overwhelming for all!

In the beginning of Feb they removed his Peripherally Inserted Central (PIC) from his vein in the right arm. This was a very long intravenous line that they had inserted through his arm and into the chest. The nurse had noticed that his arm was more swollen then the other and they immediately removed it and did an ultrasound. They found that he had a blood clot – thank goodness for the nurse noticing!! Even though he was getting a dosage of the blood thinner for the legs they increased the amount in order to combat the blood clot in the arm with expectation that he may be on this medication for 3-5 months…but that’s ok – we caught it!

Needless to say with all of the challenges and the latest information from Drs, Bob seem to take a different direction. Determination and focus took precedent.

In the last 3 weeks Bob has…..

  • increased his dangling (sitting) on the bed from 10mins to 30mins;
  • stood for 2mins (with support);
  • had his voice come back and he sounds more like himself – kind of like he has a nasal congestion;
  • spoken in sentences – didn’t even know until Ann said it to him one day;
  • maneuvered his tongue twisting it in different directions – surprised himself and me saying ‘hey look what I can do’. Now only the tip of the tongue is numb;
  • figured out how the RTs should drop his cuff and do the suction (actually he and I thought about it at the same time – ironic!). This eliminated all of the problems he had with RTs having to spend endless time trying to drain his lungs;
  • taken 2 and then 4 steps with help…still can’t feel feet…but wow!
  • been able to sing ‘row, row, your boat’ – such a beautiful voice;
  • had 2 spoonfuls of applesauce – speech therapist testing his swallowing ability;
  • started to smell again and maybe starting to think about food again;
  • to wait for the feet/hands/arms to move but he has just seen his left arm start to move again;
  • been sitting in his wheelchair with his feet placed in an ergometer (like a rowing machine) and has done up to 35mins….watch out Henderson Trainees I don’t know how long you will have an advantage over him!
  • Had the speaking valve on for the past week for up to 10hrs/day….and he hasn’t stopped chatting – Mr. social in ICU;

AND, as of Sat, Feb 19 Bob has been off the ventilator!

He is still breathing through the trach and has the cuff dropped and the speaking valve on during the daytime. They are expecting to change his trach to a smaller size this week so he can breathe and speak even better on his own.

Next steps….one step at a time, but the world is his oyster!

Click on “EMAIL SUBSCRIPTION” (below his picture) to get update notices as soon as I post on Bob’s site. I will try to provide updates on a weekly basis.

Please feel free to post comments as I read them to Bob regularly!! Also, Henderson & Oak Bay, I will be popping in to see all of you over the next week or two to take a short ‘pep’ video of all of you to show and inspire Bob!! 

Update Dec 18-29, 2010

by ramgbs


Bob continues to test his ability off of the ventilator. What this means is that they detach the ventilator from his trachea and then place an oxygen mask over his trachea to better support him as he breathes on his own.

On Dec 18, he pushed his limits and was off of the ventilator for 2 – 3 hour sessions and a 1 hour session (total 7hrs). The nurse was thrilled and decided that if he was tired the next day, he had pushed himself too far and would need to shorten the length of time OR if he was feeling good then he could pursue the same hours again. On, Dec 19 the nurse was surprised to start her shift with Bob already off the ventilator. He had asked to be off at 5am that morning. Bob remained off until 2pm – that’s 9hours!

Each day Bob has persevered to maximize his time off of the ventilator. The average amount of time has been 12hours.  One thought about why Bob has been so persistent the past 2 weeks may be related to his question – when would he be able to eat? Of course the response from the nurse was that it would not happen until he was off of the ventilator and that would be a few months…we think this may have motivated him to push the limits to reach this sooner. Do you know what Bob is looking forward to having…..surprisingly… ice cold glass of water.

On Dec 21, the Doctor and Respiratory person (RT) decided to change his trachea to a smaller one to facilitate future training with his breathing and speech. On Dec 20, he tried to say ‘hi Leslie’. I heard him, it’s not quite there but, it will come.

What a phenomenal feat to-date! My wish for Christmas was for him to be off of the ventilator – I’ll take what he has accomplished. BUT the most incredible gift he gave each of us was when we were standing beside his bed on Dec 25, Christmas Day, and he took his left arm and reached across the bed and touched my hand. I just about jumped out of my skin and screamed with excitement. When Ann came back in the room, he reached for her hand as well. Of course the movement is not fluid, still gross motor skills, but it is ‘moving’ in the right direction.

As of Dec 26 Bob continues to be off of the ventilator with a rotational schedule throughout the day – 6hrs off ventilator then 2hrs on ventilator.

Physio is daily – passive and active exercise by the Physiotherapist; wrapping of hands into a fist for 1hr; stretching/straightening fingers in frame structures for 30mins; sitting up in a wheelchair for 1hr or so; and now, being strapped to the vertical table for 10-20mins. It’s busy and draining.

On Dec 29 Bob surprised me. He crisscrossed his arms and shook his hips and legs. Stunning!

Please understand that Bob is still paralyzed and on the ventilator…..but he is slowly getting some feeling in parts of his body and this is a good sign.

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