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Old 04-15-18, 11:44 PM   #101
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Such strength in you, so what to say?

Take care of yourself, this is an endurance ride, and yes I would encourage you to ride again. Passing through an extended period of grief in my life l road my bike. A bike, and yes alone now, is a great place to cry, to howl, to pray, to give yourself over to nature, to your body and snag a small moment of balance or self back before you return to the endurance ride/life you and Rowan are passing through now.

It doesn't have to be long, in fact probably it shouldn't be, but do make a date for yourself each week or more as you can, and take time, take a ride, take a healing journey.
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Old 04-16-18, 09:11 AM   #102
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After a week on the bike, glad to get back home and read of Rowan's improvement. Long way to go yet but I'm confident he will get there. Prayers continue for you both.
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Old 04-16-18, 09:20 AM   #103
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Originally Posted by kaos joe View Post
Machka,

Best wishes from New York. Stay strong.

There is a very small simple device which can be attached to the tracheostomy tube, called a Passy-Muir valve. This is essentially a one way valve which re-directs exhaled air out of the mouth and thus through the vocal cords, rather than out through the tracheostomy. It gives the patient a much improved ability to speak, before the step of actually closing the tracheostomy (decannulation). It can also improve secretion management and oxygenation, by restoring a more normal pattern of airway pressures. Of course Rowan's physician would have to concur that he is ready.
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Such strength in you, so what to say?

Take care of yourself, this is an endurance ride, and yes I would encourage you to ride again. Passing through an extended period of grief in my life l road my bike. A bike, and yes alone now, is a great place to cry, to howl, to pray, to give yourself over to nature, to your body and snag a small moment of balance or self back before you return to the endurance ride/life you and Rowan are passing through now.

It doesn't have to be long, in fact probably it shouldn't be, but do make a date for yourself each week or more as you can, and take time, take a ride, take a healing journey.
Just a couple of reasons, the 50+ers rock:

1. Knowledge
2. Good advice. With all that is going on, you need to remember to take care of yourself, too.
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Old 04-16-18, 09:52 AM   #104
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Thanks for all of that. I appreciate it and may have more questions as time goes on.

Right now we're going through one or two good days where there seems to be some progress, and one or two days where he either doesn't change or seems to take a step back.

Sleep seems to make a difference. I really do appreciate the strict visiting hours here because he was not sleeping in ICU - so many people coming and going and noise all the time, but apparently he is getting more rest in this next ward, and today for the first time in about 3 days he stayed awake for more than about 10 minutes.

Happy to hear of Rowan's progress, even if it seems like baby steps. Continued prayers for strength and healing.


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Old 04-16-18, 08:19 PM   #105
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Machka, I'm so sorry that you and Rowan are having to go through this ordeal. As others have said, this forum is a wonderful part of the support system we all need at times like this. When I as going through my cancer treatments almost 10 years ago, the people on the 50+ forum were more helpful than I could ever express in keeping my spirits up. I hope we can be similarly helpful to you and eventually to Rowan. Thank you for sharing the updates of his progress. My best wishes and positive vibes for a full recovery.
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Old 04-17-18, 06:51 AM   #106
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Rowan has moved from ICU to the neurosurgical ward. A step in the right direction. He should be able to get better night's sleeps and they will likely start physio stuff with him to help him regain strength.

Still chest infection.
Still DVT.
Still not responding much.

But he is watching what goes on around him, frowns when he doesn't like something, and seems to raise his eyebrows when he's interested.

He's also moving both legs and his left arm.

And he's been breathing on his own (through the tracheotomy) for about 72 hours.


This ward move does, however, mean a change to visiting hours so I'll have to make some adjustments.

Moving all 4 limbs ... he started moving his right arm/hand a tiny bit yesterday. That's the arm he has the DVT in, so it's possible he didn't move it before because it was sore and swollen from the DVT.

Still breathing on his own, and swallowing on his own some of the time.
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Old 04-17-18, 07:06 AM   #107
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Thanks for the excellent news.

Not much to add .... others have said it ... except that I hope you will remember to take care of yourself as well.

Trust you both will be back cycling and posting in time.
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Old 04-17-18, 07:42 AM   #108
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Moving all 4 limbs ... he started moving his right arm/hand a tiny bit yesterday. That's the arm he has the DVT in, so it's possible he didn't move it before because it was sore and swollen from the DVT.

Still breathing on his own, and swallowing on his own some of the time.
That is awesome! We're pulling for you guys!
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Old 04-17-18, 09:27 AM   #109
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This is great news! Continuing to send prayers and healing thoughts.
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Old 04-17-18, 10:52 AM   #110
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Thank you for the continuing updates, Machka. You are the best asset Rowan has, and it sounds as though he is starting to make genuine progress.
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Old 04-17-18, 01:29 PM   #111
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Moving all 4 limbs ... he started moving his right arm/hand a tiny bit yesterday. That's the arm he has the DVT in, so it's possible he didn't move it before because it was sore and swollen from the DVT.

Still breathing on his own, and swallowing on his own some of the time.


WONDERFUL news!


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Old 04-17-18, 10:35 PM   #112
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Moving all 4 limbs ... he started moving his right arm/hand a tiny bit yesterday. That's the arm he has the DVT in, so it's possible he didn't move it before because it was sore and swollen from the DVT.

Still breathing on his own, and swallowing on his own some of the time.
Wonderful news!
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Old 04-17-18, 11:11 PM   #113
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Hi Machka,

The staff at the hospital have probably already told you this. Communication is so important. As a person goes into and comes out of a coma, hearing is often the last sense to go and first to come back. Talk to Rowan always as if he is awake. Chat about friends, the news, cycling, whatever. Have friends & family visit. Bring in his favorite music to play. Always hold his hand, touch his face, etc.

I firmly believed these things helped me come back from my coma after a race car accident in the Seventies when the technology wasn’t nearly as advanced as it is today. I was lucky enough to stage a full recovery and even go back to racing cars, much to the disappointment of my dear Mother!

It sounds like all is moving in the right direction. There are no guarantees but there is always hope. Hang in there.
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Old 04-18-18, 06:31 AM   #114
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Hi Machka,

The staff at the hospital have probably already told you this. Communication is so important. As a person goes into and comes out of a coma, hearing is often the last sense to go and first to come back. Talk to Rowan always as if he is awake.
Thanks ... and happily, he is awake. He's been out of the coma for 2 weeks now. However, he is in the Post Traumatic Amnesia phase.
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Old 04-18-18, 07:04 AM   #115
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Thanks ... and happily, he is awake. He's been out of the coma for 2 weeks now. However, he is in the Post Traumatic Amnesia phase.
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Old 04-18-18, 12:17 PM   #116
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Great news Machka!
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Old 04-18-18, 06:16 PM   #117
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Thanks ... and happily, he is awake. He's been out of the coma for 2 weeks now. However, he is in the Post Traumatic Amnesia phase.
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Old 04-18-18, 07:46 PM   #118
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Thanks ... and happily, he is awake. He's been out of the coma for 2 weeks now. However, he is in the Post Traumatic Amnesia phase.

Rowan has been diagnosed with PTA - Post Traumatic Amnesia. This is a normal phase people with brain injuries go through with a number of possible behaviours. Rowan may experience none, some, or all of the behaviours to some degree or another ... it just depends. Each patient is different.

As you know, his is a severe brain injury, he's not responding to command, and he's not really communicating, so his PTA phase will be longer than if it were a mild brain injury, but there's no way of knowing exactly how long it might be. Likely "weeks".

During this time, it is recommended that visitors ...

• Talk in soft, calm voices.
• Speak slowly and clearly to him, and be prepared to repeat things.
• Read calm material quietly. Listen to soft, slow music. Show him photos.
• Have some familiar items in the room, but not clutter.
• Don’t bombard him with stimulus. For example, TV or movies would probably not be a good idea right now.
• Keep room quiet and lights dim.
• Restrict visitors.

There is lots on Google about PTA.
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Old 04-18-18, 10:04 PM   #119
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This is going to be a very long process.

I will pray that you be given patience.

Cycling has already taught you endurance but I will pray that you get more.

And I will pray for the doctors and nurses, and that Rowan is comfortable, and that somehow through this you find peace.
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Old 04-18-18, 10:06 PM   #120
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Post Traumatic Amnesia was never mentioned in my case. Maybe it is something that they have identified fairly recently? I know that I officially emerged from my coma at 10-12 days. My first memory is at 14 days when friends and family came to visit. I also could not remember the week prior to my race car accident and those memories came back...although the afternoon of the accident forever remains a mystery. Good thing, I say. Who would want a frightening memory like that?

Good on ya, Machka, It sounds like things are progressing well for you both.
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Old 04-18-18, 11:07 PM   #121
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Until now, I had never heard of PTA but on going to Wikipedia, I see that I had it, no question. Funny, there was one sentence, "Patients may also have a tendency to wander off, ...". When I returned to the hospital for my followup, I went to both the ICU and my regular ward. At the ward I was greeted by my nurses who told me of the hospital wide scare I set off when I disappeared. Seems I had wondered out to the staircase. Having lost a lot of coordination, going downstairs was very difficult (I had a bruise on the base of my motor nerves which had put my right side into seizure and erased all right side learned skills - a real challenge when you are very right handed. Going down stairs still takes real attention 40 years later. I used to do two steps at a time almost always before.) Since going down stairs was so difficult, I, being a good bike racer, did the logical. I went up the stairs. To the top floor. (5 floors up?) Eventually a space case was found wandering the top floor and I got returned to quarters. After that, when I disappeared, they would just retrieve me from that floor. (One of my very few hospital memories was looking out that staircase window!)

As spacey as I was, there was an engineering consistency to my decisions. Like how to walk down halls when I couldn't remotely walk a straight line. I'd just follow close to one wall and steer slightly toward it, periodically bouncing off and correcting my course. Problem was my other injury, a broken right collarbone. Glancing the walls wasn't too bad, but hitting the far door frame hurt like h***! Solution? Walk the left side walls. I did notice a steady stream of people constantly coming at me so it wasn't ideal, but much better than the alternative. Now the idea that I might be injured and should stay in bed? Never crossed my mind.

Machka, Rowen is going to be a handful for a while. Do your best to keep a sense of humor. Some of it will be quite funny in hindsight.

Ben
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Old 04-19-18, 08:30 PM   #122
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Brain injuries are complex. When I took my spill last summer, I had a mild concussion to go with the assorted orthopedic injuries. I didn’t even land on my head per se, from what I can piece together and what logic tells me — road rash on the side of my face to my ear, and a little scuff on the trim and strap assembly of the helmet around the ear. I think I was knocked out for maybe seconds or a minute. I just can’t remember the last 2 miles, about 8 minutes, of that ride. And I had some pretty disjointed thoughts for about 2 or 3 weeks, in random bits here and there. Mainly in finding the right word ... I would say or write something like “today is Seven, August 24th”’instead of Thursday, August 24th. It was pretty comical albeit trivial. It all went away in about 3-4 weeks. My entire situation was minor compared to what Rowan is going through.

Really, I’m so sorry you both are going through this. Having been the primary caregiver for my mom at the end of her life a few years back, I understand how hard this is, physically and mentally. Please know you have my sympathy, and remember to get support, rest, and take care of yourself. You won’t be any good to him or yourself if you wear yourself out to the point of collapse. God bless, my prayers for a full recovery.
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Old 04-20-18, 04:40 AM   #123
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Rowan Update

Talked to the main Rehab people and Rowan is on the waitlist to get into the Rehab Unit. He has to meet certain criteria (like swallowing 24-hours a day) for that first, and then the minute there's room, they'll move him. Maybe ... 3 weeks?

And then that's where he'll live for a long time.

They can't give me any specifics ... every patient is different and these are early days.

  • He's still pretty calm, although occasionally restless.
  • He's talking! They've installed an automatic speech valve onto his trach. So he says, "Yeah" ... whether he really means "Yes" or not. But they are pleased that he's using his voice.
  • They had him sort of sitting up in a chair for a little while today ... a special chair that reclines and is designed for someone like him. So he's not bolt upright or anything, but at least it is a bit different from the bed.


Meanwhile ...

I went back to work for a couple hours today ... just easing into it.

I attended a meeting for my university course as a part of the first big assignment. I'm about halfway through that course.

And I've got my eye on a 5K run at the end of May which I might work toward.

Last edited by Machka; 04-20-18 at 04:52 AM.
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Old 04-20-18, 05:26 AM   #124
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Re: Rowan Update
Lots of good news. Thanks.
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Old 04-20-18, 06:03 AM   #125
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And I've got my eye on a 5K run at the end of May which I might work toward.
Good. Don't forget to take care of yourself too.
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