[dominic]

My son is 20 years old and was a fit able young Royal Marine until the 9th Feb 2008 when he broke his neck C5 has been removed and a plate put in. He was very fit and healthy before the acciddent. He has no head injury and has a positive attitude.

He is at present in intensive care in a general hospital and im not sure if I am doing the right things.
I want to get him into a rehab specialist spinal unit as soon as possible I believe Stoke Mandeville is the best but doctors say he can not be moved yet because there is a long waiting list.

They are giving him a tracheostomy tomorrow; not before time, he has feeling down to his biceps and can breathe by himself but not sure if he has the coughing reflex. The Marines want to send him to Headley Court in Surrey but I dont have enough information about their spinal injury unit.

Can any one advise me on how to get some information of where I go now?

Thanks

Doms Mum

[kewlcatkez]

dominic, on Feb 17 2008, 06:25 PM, said:

My son is 20 years old and was a fit able young Royal Marine until the 9th Feb 2008 when he broke his neck C5 has been removed and a plate put in. He was very fit and healthy before the acciddent. He has no head injury and has a positive attitude.

He is at present in intensive care in a general hospital and im not sure if I am doing the right things.
I want to get him into a rehab specialist spinal unit as soon as possible I believe Stoke Mandeville is the best but doctors say he can not be moved yet because there is a long waiting list.

They are giving him a tracheostomy tomorrow; not before time, he has feeling down to his biceps and can breathe by himself but not sure if he has the coughing reflex. The Marines want to send him to Headley Court in Surrey but I dont have enough information about their spinal injury unit.

Can any one advise me on how to get some information of where I go now?

Thanks

Doms Mum

Hi Dom's mum,

Sorry that you had to find us due to these circumstances,

I am going to speak form my experiences ( as a trained RN) and what I have gleaned since my life took this path, so hope that is ok. My Forté is Cardiology, so bear that in mind, lol...

As your son is able to breathe on his own, I wanted to provide (perhaps) some of the reasoning for the trach/ventilation. I presume that they are not needing to sedate or paralyze his breathing for surgery? ( ie anaethetise), as you say that they are placing a Trach and do not mention it. Therefore, the reason is probably to do with his injury and preventing difficulties, especially when they transfer him.

Changes in breathing patterns are observed following SCI/D affecting the thoracic and cervical spine. Obviously, the higher up the injury/lesion, the more of an effect it will have. After a higher C injury, paralysis of the hemi-diaphragm results in quite a big reduction in (tidal) volume and an increase in respirations. This can lead to fatigue, in much the same way as Asthmatics who are trying to breathe through reduced airways. Although your son is able to breathe on his own, it may be safer at this time, for him to be Intubated/ventilated. The Trach. is the best way to do this. Muscle strengthening, pacing and 'residual' muscle bulking up as well as Physio therapy, Respiratory Therapy etc will be delivered during this ( in ICU).

As your son is able to take breaths and probably will continue to do so, he will probably be able to have a 'speaking valve' placed and will then be able to communicate a bit better with you all.

With regards to the move, If he is still requiring Intensive Care Nursing, then he will need to stay in ITU/ICU. the nurses and drs there are well equipped to care for the Paralysed person, since they care for people who are in "comas" and are effectively paralysed, if only whilst in the coma, and so have the same total care needs. The concern re pressure areas is of course very real, but as he is in ICU he will have a ratio of 1:1, or 1:2 max ( usually transition patients) so it really is the best place to 'wait' for his rehab place.

Stoke Mandeville is a very good SIU, please do peruse the sections here about it, and I hope that people who have rehab'd there will be able to share their experiences ( good and bad) with you. Please also see the website, if you haven't already, by clicking the following link HERE There are other SIU ( Spinal Injury Units) in the Uk which are also very good, please see the following Apparelyzed link for details of them all: http://www.apparelyz...pinalunits.html

I do believe that the true Military hospitals are no longer around, but Rehab and treatment facilities do still exist. Standards are apparently greater than they were, but I have no firm evidence of that for you. Headley Court is a Military Facility ( as u know) which is utilised by the Forces to help take care of 'their own'. It happens to have a staff of over 200 which are actually "rehab" staff, although I do not know how many or these are specifically SCI specialists.

I would think that you ( acting on your son's behalf as his next of kin) would need to get in touch with his direct superior, and then his/her's and ask for the correct channels to go through in order for your son to decide on the hospital of his choice. It is complicated by the fact that as a member of the armed services ( until such time as they medically discharge him etc) he is under obligation to go where they prefer him to go. I speak from experience of someone I know who went through a similar experience. What I would say is that you need to get medical ( consultant, Physios, Anaesthetists etc) to give Medical or prognosis reasons as to where he must go to the facility that YOU and HE want to go to. It may be that you wish to follow their lead and go to Headley, it may not.
Please see the following Click Here it is a fact sheet regarding Headley Court.

also, please see Forces reunited Headley Court It has info about people who have been stationed there. If you were to ask some of them, they may have some advice for you about the facilities etc etc.
I hope this isn't repeating anything for you,

Anyway, I will leave it for now, will bob back and add a few things later, but gotta dash for now. All the best for your son, and you.

Let us know how things are going,

Take care,

K

oh, also check out http://www.helpforhe...unchspeech.html it may be of some use to you all.. k x

back again - I am sure that you have seen his already, but please see http://www.pmrafns.org/HC.HTM It states :

Quote

" Facilities and staffing levels have been developed to provide an intensive programme of rehabilitation, and vocational assessment, which is carried out by a specialist and highly experienced multi-professional team.

The Neurological Rehabilitation Team are committed to involving families and carers in the patients therapy and keeping up to date with neurological practice.

again, hth, K x

This post has been edited by kewlcatkez: 17 February 2008 - 07:37 PM

[dominic]

kewlcatkez, on Feb 17 2008, 07:30 PM, said:

dominic, on Feb 17 2008, 06:25 PM, said:

My son is 20 years old and was a fit able young Royal Marine until the 9th Feb 2008 when he broke his neck C5 has been removed and a plate put in. He was very fit and healthy before the acciddent. He has no head injury and has a positive attitude.

He is at present in intensive care in a general hospital and im not sure if I am doing the right things.
I want to get him into a rehab specialist spinal unit as soon as possible I believe Stoke Mandeville is the best but doctors say he can not be moved yet because there is a long waiting list.

They are giving him a tracheostomy tomorrow; not before time, he has feeling down to his biceps and can breathe by himself but not sure if he has the coughing reflex. The Marines want to send him to Headley Court in Surrey but I dont have enough information about their spinal injury unit.

Can any one advise me on how to get some information of where I go now?

Thanks

Doms Mum

Hi Dom's mum,

Sorry that you had to find us due to these circumstances,

I am going to speak form my experiences ( as a trained RN) and what I have gleaned since my life took this path, so hope that is ok. My Forté is Cardiology, so bear that in mind, lol...

As your son is able to breathe on his own, I wanted to provide (perhaps) some of the reasoning for the trach/ventilation. I presume that they are not needing to sedate or paralyze his breathing for surgery? ( ie anaethetise), as you say that they are placing a Trach and do not mention it. Therefore, the reason is probably to do with his injury and preventing difficulties, especially when they transfer him.

Changes in breathing patterns are observed following SCI/D affecting the thoracic and cervical spine. Obviously, the higher up the injury/lesion, the more of an effect it will have. After a higher C injury, paralysis of the hemi-diaphragm results in quite a big reduction in (tidal) volume and an increase in respirations. This can lead to fatigue, in much the same way as Asthmatics who are trying to breathe through reduced airways. Although your son is able to breathe on his own, it may be safer at this time, for him to be Intubated/ventilated. The Trach. is the best way to do this. Muscle strengthening, pacing and 'residual' muscle bulking up as well as Physio therapy, Respiratory Therapy etc will be delivered during this ( in ICU).

As your son is able to take breaths and probably will continue to do so, he will probably be able to have a 'speaking valve' placed and will then be able to communicate a bit better with you all.

With regards to the move, If he is still requiring Intensive Care Nursing, then he will need to stay in ITU/ICU. the nurses and drs there are well equipped to care for the Paralysed person, since they care for people who are in "comas" and are effectively paralysed, if only whilst in the coma, and so have the same total care needs. The concern re pressure areas is of course very real, but as he is in ICU he will have a ratio of 1:1, or 1:2 max ( usually transition patients) so it really is the best place to 'wait' for his rehab place.

Stoke Mandeville is a very good SIU, please do peruse the sections here about it, and I hope that people who have rehab'd there will be able to share their experiences ( good and bad) with you. Please also see the website, if you haven't already, by clicking the following link HERE There are other SIU ( Spinal Injury Units) in the Uk which are also very good, please see the following Apparelyzed link for details of them all: http://www.apparelyz...pinalunits.html

I do believe that the true Military hospitals are no longer around, but Rehab and treatment facilities do still exist. Standards are apparently greater than they were, but I have no firm evidence of that for you. Headley Court is a Military Facility ( as u know) which is utilised by the Forces to help take care of 'their own'. It happens to have a staff of over 200 which are actually "rehab" staff, although I do not know how many or these are specifically SCI specialists.

I would think that you ( acting on your son's behalf as his next of kin) would need to get in touch with his direct superior, and then his/her's and ask for the correct channels to go through in order for your son to decide on the hospital of his choice. It is complicated by the fact that as a member of the armed services ( until such time as they medically discharge him etc) he is under obligation to go where they prefer him to go. I speak from experience of someone I know who went through a similar experience. What I would say is that you need to get medical ( consultant, Physios, Anaesthetists etc) to give Medical or prognosis reasons as to where he must go to the facility that YOU and HE want to go to. It may be that you wish to follow their lead and go to Headley, it may not.
Please see the following Click Here it is a fact sheet regarding Headley Court.

also, please see Forces reunited Headley Court It has info about people who have been stationed there. If you were to ask some of them, they may have some advice for you about the facilities etc etc.
I hope this isn't repeating anything for you,

Anyway, I will leave it for now, will bob back and add a few things later, but gotta dash for now. All the best for your son, and you.

Let us know how things are going,

Take care,

K

oh, also check out http://www.helpforhe...unchspeech.html it may be of some use to you all.. k x

back again - I am sure that you have seen his already, but please see http://www.pmrafns.org/HC.HTM It states :

Quote

" Facilities and staffing levels have been developed to provide an intensive programme of rehabilitation, and vocational assessment, which is carried out by a specialist and highly experienced multi-professional team.

The Neurological Rehabilitation Team are committed to involving families and carers in the patients therapy and keeping up to date with neurological practice.

again, hth, K x

Thankyou so much for getting intouch with me the information has been invaluable and mad me feel that my husband and I are not on our own. I am now going to trawl throgh some of the site you have given me.
Best Wishes W

[kewlcatkez]

dominic, on Feb 17 2008, 11:16 PM, said:

Thankyou so much for getting intouch with me the information has been invaluable and mad me feel that my husband and I are not on our own. I am now going to trawl throgh some of the site you have given me.
Best Wishes W

Hi again,

I hope that some of the links do help.
Also, here at Apparelyzed you have stumbled upon a fabulous place. I have got so much from just being here, I hope that it continues to help you, hubby and hopefully perhaps Dominic when he gets online - if he wants to!

I had another thought, I would advise that you ask the nursing staff for the name of the consultant your son is under. Sounds silly but often they will be cared for by mainly the Anaesthetist dr in ICU but will be officially under another SCI/Medical consultant. Ask for a meet up with both these drs. It may be on the ICU unit itself. The best way to organise it is to ring the PA/Secretary if the consultant. All you need is a name as Switchboard can put you through to the correct PA etc. Then ask the consultant(s) for their support and opinions. It may be that they advise Headley Court. However if they don't, or if you wish them to select another SIU, you can ask for them to either speak directly with the Military superior, or document an opinion, as we said above.

I hope this helps,

Take care and do let us know how he is doing,

K

This post has been edited by kewlcatkez: 18 February 2008 - 01:36 AM

[Yong]

This must be a very difficult time for you.

I was injured almost 10 months ago, at age 21. I was a full time college student and also in the US Marine Corps PLC (officer training program). I saw your post and your son's situation reminded me of mine.

There are not many things that we can tell you that will truly give you any consolation, but 10 months post-injury, I am beginning to find my life a lot more livable. I changed my then Accounting major to pharmacy, I am pursuing a job as a pharmacy technician until I get into pharmacy school. I met a girl that I am now in love with. Things are just the way they used to be..

If there is one advice I'd like to suggest, it is to keep your son busy...keep his mind occupied. I found that being in the hospital (i was in there plus rehab for 3 and a half months) really gives a person spare time for their mind to wander. Keep him busy and nature will just take its course.

I wish you the best of luck..you are in my prayers.

[Paul Breen]

Hi,

Sorry to hear about your situation. I have a lot of information that I can send to you that may be of use at this time, including charities that may be able to provide support, and websites that can provide you with information to research some of the areas you are looking at. Please let me know if you would like me to send any information through.

Paul

dominic, on Feb 17 2008, 06:25 PM, said:

My son is 20 years old and was a fit able young Royal Marine until the 9th Feb 2008 when he broke his neck C5 has been removed and a plate put in. He was very fit and healthy before the acciddent. He has no head injury and has a positive attitude.

He is at present in intensive care in a general hospital and im not sure if I am doing the right things.
I want to get him into a rehab specialist spinal unit as soon as possible I believe Stoke Mandeville is the best but doctors say he can not be moved yet because there is a long waiting list.

They are giving him a tracheostomy tomorrow; not before time, he has feeling down to his biceps and can breathe by himself but not sure if he has the coughing reflex. The Marines want to send him to Headley Court in Surrey but I dont have enough information about their spinal injury unit.

Can any one advise me on how to get some information of where I go now?

Thanks

Doms Mum

[kewlcatkez]

Hi Dom's mum,

Just wanted to add a few more links which I have found in my files:

http://www.ssafa.org.uk/ Is the Soldiers, Sailors, Airmen and Families Association (SSAFA) Forces Help

Not sure if you are religious or if you are, which religion you follow, however http://www.afcu.org.uk/ Is the Christian Union of the Armed Forces and offers support to all.

And..for a little farther down the line: http://www.rfea.org.uk/ A charity which: Assist ex-regular Servicemen and women to find employment throughout their working life

I hope this helps, I will bob back on later,

Take care,

K


oh, and http://www.justgivin...de/Armed-forces "Just Giving", has a number of links which "Social welfare organisations: Armed forces Many former service men and women find it hard to cope after leaving the forces. These charities offer support after retirement, and to those who have left the forces through ill health or injury."

There are lots of links on that page

K

This post has been edited by kewlcatkez: 18 February 2008 - 10:23 AM

[dominic]

kewlcatkez, on Feb 18 2008, 10:19 AM, said:

Hi Dom's mum,

Just wanted to add a few more links which I have found in my files:

http://www.ssafa.org.uk/ Is the Soldiers, Sailors, Airmen and Families Association (SSAFA) Forces Help

Not sure if you are religious or if you are, which religion you follow, however http://www.afcu.org.uk/ Is the Christian Union of the Armed Forces and offers support to all.

And..for a little farther down the line: http://www.rfea.org.uk/ A charity which: Assist ex-regular Servicemen and women to find employment throughout their working life

I hope this helps, I will bob back on later,

Take care,

K


oh, and http://www.justgivin...de/Armed-forces "Just Giving", has a number of links which "Social welfare organisations: Armed forces Many former service men and women find it hard to cope after leaving the forces. These charities offer support after retirement, and to those who have left the forces through ill health or injury."

There are lots of links on that page

K

Dominic has had his trackie yesterday and is much more alert he has an infection in his right lung and has a little support from the machine. I am seeing the medical consulltant today and have lots of questions to ask. I have been told it will take months to get him into a rehab place so I am starting to look at stoke mandivale just to see the who they will take the information I have read says the earlier he starts the more they can do hopefully.
I am looking through the web sites that you have sent and they are really informative.

W

[kewlcatkez]

dominic, on Feb 19 2008, 09:23 AM, said:

Dominic has had his trackie yesterday and is much more alert he has an infection in his right lung and has a little support from the machine. I am seeing the medical consulltant today and have lots of questions to ask. I have been told it will take months to get him into a rehab place so I am starting to look at stoke mandivale just to see the who they will take the information I have read says the earlier he starts the more they can do hopefully.
I am looking through the web sites that you have sent and they are really informative.

W

Hello again W,

Thank you for the update. I am happy to read that Dominic is improving. I am sure that they have him on IV antibiotics and respiratory therapy (discussed below), which will also help..

With regards to the Meeting with the Consultant, etc. Do see if you can find out how long it would take to get Dominic into the Headley Park (as a comparison) It may be that you could compromise and, if there is a short wait for the Military facility, perhaps Dominic and you could see if he could go there first and then transfer on to the SIU of your choice when it is available. DO ENSURE that he is kept on the wait list though. It should be possible to do this because He is entitled to go to a Rehab NHS place and so going to the Military one and then transferring may be the solution for all.

I am unsure as to the quality of the rehab, but do suggest that you find this out first (I am sure that you will), I would think that Rehab and Physio etc there will be more frequent than that found in a General NHS ward. However, of course if he needs Trach care nursing, it will be a matter of whether Headley Park take Dominic with his trach ( you would be surprised how many facilities don't) They should.

If at all possible, as Dominic's Next of Kin, and with his agreement, perhaps see if you can arrange for a meeting with his superiors after this meeting with the Consultant.

With regards to Dominic's Tracheostomy, it is for this very reason, I would think, that he has been a candidate for the trach tube and the 'assistance' when required. As I said last time, the effects of the paralysis on the chest and so the diaphragm means that Dominic's intercostal muscles will need to strengthen. Right now, his diaphragm may be affected (varying degrees). At his level of injury, this is usually the amount of air which can be taken into the lungs and the ability to cough up gunk and his intercostal ( between rib) muscles and other accessory muscles which will be affected.

To expand this further, the act of breathing involves more than the Diaphragm (altho it is of course key). Breathing includes more than the Diaphragms movement. Therefore, the diaphragm can sometimes be moved by the other inspiratory muscles - Intercostal (between the ribs) etc, and so Some people with very high injuries can breathe without a vent for moderate periods - eventually. (the muscles have to strengthen). So please be reassured that Dominic's vent, at his level of lesion (injury) will not have a ventilator for very long. Chest physio, Chest percussion (where the chest is tapped loosen secretions) etc are very useful not just to prevent infection, but to help strengthen/initiate a cough, which makes the muscles work!

Therefore, once he has had Physio therapy (PT) and Chest physio (sometimes called respiratory therapy) and his infection has been cleared using those, in combination with IV antibiotics, his accessory muscles will begin to strengthen and support his Diaphragm, in breathing. His body has a lot of healing to do in terms of the surgery and the inflammation etc, so it is paramount that the Drs put him on the trach/vent. It is so much better for his positioning, mouth care and eventually speaking using a valve which pops into the tube.


I hope that this helps. Sorry if it repeats things you know already, I just wanted to reassure you as far as I can. Please do continue to update us! I have some more links and will dig them out and send them later,

Take care,

K