I'm new here

monkey · 01-10-2006, 11:51 PM

Hi everyone...I'm new here too although I have been poking around for a while and getting a feel for what all is here not only for my husband (T8,9,10 complete as of 4-16-05...he fell 16 feet from a ladder while trimming a tree) but for me too. He spent 8 months in various hospitals and rehab, had all kinds of other medical problems including having intestinal surgery for an ileus that kept recurring and caused severe diahrea, only to be diagnosed with Crohn's disease. He went into a coma on July 5th, they think due to a mucous plug. We never really got a specific diagnosis. They also thought he might have ALS (Lou Gerhigs disease) and so they took muscle and nerve biopsies, told us we'd have the results in 4 weeks then proceeded to take 3 months. Three months we lived with the thought that he had this terrible disease for which there is no cure. The doctor told me that Ron would not be coming home. Well, he was wrong about that. No ALS for my husband. Paraplegia and Crohn's is enough. On top of all that he had shoulder surgery to repair two torn tendons in his rotator cuff, of which only one took. We found out yesterday that he also has a tear in his bicep tendon of the same shoulder.
He finally was able to come home on Dec. 13th. Rehab did a great job in preparing me for the medical stuff (he also has a stage 4 decubitus ulcer on his sacrum that he got during his stay in ICU when he went into the coma) but did they prepare me at all for all the emotions that were to be when he came home after 8 months? NO. That first week was hell but things are getting easier now. It's been almost a month. I went to my dr. and he put me on Paxil which is working great.
WHEW!! Sorry to vent so long but I need to know if things really get to where it's no big deal any more. Everything takes so long now. Can anybody give me any advice or maybe you have some ideas to make things easier?
Thanks for any help...so glad to find this site.
Marcia

LaMemChose · 01-11-2006, 12:03 AM

Hi, Monkey. Your husband has definitely been through the medical wringer and you've been through a different type. I'm glad you found CC. Hopefully you and your husband will find lots of information and the support you need. **Hugs** Mem

lilsister · 01-11-2006, 12:34 AM

Hello and welcome! Without any ado----YES, it does get easier, much,much easier. What really helped me was getting into a routine with cares, then you both can help remind each other of things that need to be done, it's easy to forget things at first! I got a calender with boxes to write in, kept track of BP, dressings, appts, etc. A journal helps too for mental health and makes you sit down and relax while purging. Get organized, put medical supplies where they are convenient to whomever will be using them, really saves time and tempers. Cook in large amounts and freeze half for those days when you need to relax or are busy, it's like getting free time. If anyone asks if they can do anything for you DON'T demur, ask for meals, gutter cleaning, snow shoveling, etc. People really do want to help but the offers come less often with time. Ask his friends over for meals, cards, whatever interests him and use that time to get out of the house for yourself. Sorry, got going there! But, it does get easier, remember that when things happen, like a bowel accident, gas, etc sometimes it's easier to just laugh with him, takes the stress off both of you. Deb

NorthQuad · 01-11-2006, 12:47 AM

Yeah, the first while it really does suck trying to get used to the body that doesn't funtion. Then there's everything else that a person has to adjust to. It does get better though but it seemed like an eternity.

monkey · 01-11-2006, 10:34 PM

Thank you for the help and the encouraging words. I sometimes feel like we've taken so many backward steps that I wonder if we'll ever catch up. It looks like organization is the key and I like the calender idea. I will start that tonight. I am pretty organized but there are definitely places that can be improved upon. Since he has only been home a month, we are still working on what works and what doesn't.

I am really glad to hear that it does get better, especially from someone who's been there.

brocko · 01-11-2006, 10:46 PM

Sure sounds like you have been on a hellish medical merry-go-round. In a couple more months you'll be surprised at how much better everything is, gonna be hurdles for sure, but every little bit of progress is a victory. My best advice is to work on building a routine that works for you both. Don't get stuck in the rut of doing it the way they did it in hospital, pretty much everything is flexible, do it when/how it suits you both, and plenty of water! Also you must try and get away for a few hours regularly, don't stop your life completely.

alissamfarrell · 01-11-2006, 11:25 PM

you've been down a long road. I just found this website and just started browsing around too. My hubby is a T-6 complete and his 1 yr. anniv. is coming up - 1/23. When his accident first happened, everyone reminded me that I need to take care of myself too. So I started journaling and went to a few counseling sessions to help me deal and be able to be part of a team with my hubby. I think what has helped us the most is just to make sure we are talking to each other no matter what, and still being able to be honest with each other. I keep thinking how he almost died and how important it is to live your life to the fullest, and that's been our goal- to live this new life with a new path the best we can. we have our hard days, but it's been important to stay busy for me, going back to work and staying in contact wiht friends/family. I still find it therapeutic for me to tell the story and talk about the past year. Just gotta find what works for you. stay strong.

bobbyg · 01-12-2006, 07:34 AM

Hi, Marcia. Welcome to CC!

What is being done for the sacral decub? My son Jake, (32, C5/C6 and anoxic brain injury, finally home with us after two years...) had a sacral decub the size of a chicken egg. It took a long, long time to heal, but is now a healed crater. The biggest problem with getting it to start granulating was that the depth made cleaning the slough (yellow stuff that oozes from necrotic tissue) very challenging. Finally, the hospital suggested using maggot debridement, and it worked! Pretty weird, but those little guys eat only the bad stuff, leaving a fresh surface clean of necrosis. Then a wound vac was used--a machine that pulls good blood to the surface to heal the wound. It requires the person to be on their side, but then you don't want pressure on the sacrum, anyway, with a decub there.

What a roller-coaster ride, eh? I sure wish you the best, and a good support system to help you get through it. Deb's advice is right on--the more organized you get things, the more chances you'll have to spend time on the enjoyable things, breaks, quiet times, social occassions...the first year really does seem to be the hardest, as you become more familiar with routine needs and practice wading through setbacks. Two steps forward, one step back, is good to remember when tough days come.

All this advice is good stuff--especially 'plenty of water'! Gotta wash away the stress junk that gets left in the bloodstream!

Bless you! Tana

Birdy · 01-12-2006, 10:07 AM

Hiya Monkey
Im quite new to this site too. You'll find loads of info on here thats really relevant. My boyfiend is 18months post injury. The first year is definately the hardest. I agree with all the other posts though - stay organised, it makes life so much more easier. Im quite lucky cos im an organised person anyway (think monica on friends!!). things will get easier, when i look back at how we were when he first left hospital i cant believe how we got through one day never mind a whole year!! I was always terrified of transfering him in case he fell!! and getting him in a car on my own was a definate no no!! Now though i do all these things and more without even batting an eye! I still have bad days but the good ones are far more frequent now!
We're all here if you want to talk x

Obieone · 01-12-2006, 10:57 AM

Welcome to CC Monkey ..... I always preface my comments to newbies by saying ... I'm so sad you had to find us but so thankful that you did because I know how much support and info you will find here! You and your family certainly have been through the wringer ..... you just come here and vent any daggum' time you want

... my husband Bill is T5 post 8 years and is 58 years young .... we've just come through some serious medical issues as well and lived to tell the tale ..... again ..... when you look back you will be amazed at yourself .. you will look at the world so differently and marvel at the things people complain about relative to your life ... you will shake your head ... we're tough as nails somedays and jellyfish on others but we survive ... any way we can ...

Obieone

.. now if we can just get thru this dagum' Winter

... awww Prairie life !!

01-10-2006, 11:51 PM	#1
monkey Junior Member Join Date: Dec 2005 Location: Atascadero, CA Posts: 17	I'm new here Hi everyone...I'm new here too although I have been poking around for a while and getting a feel for what all is here not only for my husband (T8,9,10 complete as of 4-16-05...he fell 16 feet from a ladder while trimming a tree) but for me too. He spent 8 months in various hospitals and rehab, had all kinds of other medical problems including having intestinal surgery for an ileus that kept recurring and caused severe diahrea, only to be diagnosed with Crohn's disease. He went into a coma on July 5th, they think due to a mucous plug. We never really got a specific diagnosis. They also thought he might have ALS (Lou Gerhigs disease) and so they took muscle and nerve biopsies, told us we'd have the results in 4 weeks then proceeded to take 3 months. Three months we lived with the thought that he had this terrible disease for which there is no cure. The doctor told me that Ron would not be coming home. Well, he was wrong about that. No ALS for my husband. Paraplegia and Crohn's is enough. On top of all that he had shoulder surgery to repair two torn tendons in his rotator cuff, of which only one took. We found out yesterday that he also has a tear in his bicep tendon of the same shoulder. He finally was able to come home on Dec. 13th. Rehab did a great job in preparing me for the medical stuff (he also has a stage 4 decubitus ulcer on his sacrum that he got during his stay in ICU when he went into the coma) but did they prepare me at all for all the emotions that were to be when he came home after 8 months? NO. That first week was hell but things are getting easier now. It's been almost a month. I went to my dr. and he put me on Paxil which is working great. WHEW!! Sorry to vent so long but I need to know if things really get to where it's no big deal any more. Everything takes so long now. Can anybody give me any advice or maybe you have some ideas to make things easier? Thanks for any help...so glad to find this site. Marcia

01-11-2006, 12:34 AM	#3
lilsister Senior Member Join Date: Jan 2003 Location: Madison,Wisconsin, USA Posts: 1,481	Monkey, Hello and welcome! Without any ado----YES, it does get easier, much,much easier. What really helped me was getting into a routine with cares, then you both can help remind each other of things that need to be done, it's easy to forget things at first! I got a calender with boxes to write in, kept track of BP, dressings, appts, etc. A journal helps too for mental health and makes you sit down and relax while purging. Get organized, put medical supplies where they are convenient to whomever will be using them, really saves time and tempers. Cook in large amounts and freeze half for those days when you need to relax or are busy, it's like getting free time. If anyone asks if they can do anything for you DON'T demur, ask for meals, gutter cleaning, snow shoveling, etc. People really do want to help but the offers come less often with time. Ask his friends over for meals, cards, whatever interests him and use that time to get out of the house for yourself. Sorry, got going there! But, it does get easier, remember that when things happen, like a bowel accident, gas, etc sometimes it's easier to just laugh with him, takes the stress off both of you. Deb

01-11-2006, 10:34 PM	#5
monkey Junior Member Join Date: Dec 2005 Location: Atascadero, CA Posts: 17	Thanks for the help tips Thank you for the help and the encouraging words. I sometimes feel like we've taken so many backward steps that I wonder if we'll ever catch up. It looks like organization is the key and I like the calender idea. I will start that tonight. I am pretty organized but there are definitely places that can be improved upon. Since he has only been home a month, we are still working on what works and what doesn't. I am really glad to hear that it does get better, especially from someone who's been there.

01-12-2006, 10:07 AM	#9
Birdy Junior Member Join Date: Jan 2006 Location: England Posts: 29	Hiya Monkey Im quite new to this site too. You'll find loads of info on here thats really relevant. My boyfiend is 18months post injury. The first year is definately the hardest. I agree with all the other posts though - stay organised, it makes life so much more easier. Im quite lucky cos im an organised person anyway (think monica on friends!!). things will get easier, when i look back at how we were when he first left hospital i cant believe how we got through one day never mind a whole year!! I was always terrified of transfering him in case he fell!! and getting him in a car on my own was a definate no no!! Now though i do all these things and more without even batting an eye! I still have bad days but the good ones are far more frequent now! We're all here if you want to talk x __________________ Birdy

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01-11-2006, 12:03 AM	#2
LaMemChose Senior Member Join Date: Oct 2005 Posts: 10,937	Hi, Monkey. Your husband has definitely been through the medical wringer and you've been through a different type. I'm glad you found CC. Hopefully you and your husband will find lots of information and the support you need. Hugs Mem

01-11-2006, 12:47 AM	#4
NorthQuad Senior Member Join Date: Dec 2004 Location: Alberta, Canada Posts: 6,732	Yeah, the first while it really does suck trying to get used to the body that doesn't funtion. Then there's everything else that a person has to adjust to. It does get better though but it seemed like an eternity.

01-11-2006, 10:46 PM	#6
brocko Senior Member Join Date: Nov 2004 Location: Digital refugee Posts: 1,741	Sure sounds like you have been on a hellish medical merry-go-round. In a couple more months you'll be surprised at how much better everything is, gonna be hurdles for sure, but every little bit of progress is a victory. My best advice is to work on building a routine that works for you both. Don't get stuck in the rut of doing it the way they did it in hospital, pretty much everything is flexible, do it when/how it suits you both, and plenty of water! Also you must try and get away for a few hours regularly, don't stop your life completely.

01-11-2006, 11:25 PM	#7
alissamfarrell Junior Member Join Date: Nov 2005 Location: Colorado Posts: 5	you've been down a long road. I just found this website and just started browsing around too. My hubby is a T-6 complete and his 1 yr. anniv. is coming up - 1/23. When his accident first happened, everyone reminded me that I need to take care of myself too. So I started journaling and went to a few counseling sessions to help me deal and be able to be part of a team with my hubby. I think what has helped us the most is just to make sure we are talking to each other no matter what, and still being able to be honest with each other. I keep thinking how he almost died and how important it is to live your life to the fullest, and that's been our goal- to live this new life with a new path the best we can. we have our hard days, but it's been important to stay busy for me, going back to work and staying in contact wiht friends/family. I still find it therapeutic for me to tell the story and talk about the past year. Just gotta find what works for you. stay strong.

01-12-2006, 07:34 AM	#8
bobbyg Senior Member Join Date: Dec 2004 Location: Everwett WA Posts: 195	Hi, Marcia. Welcome to CC! What is being done for the sacral decub? My son Jake, (32, C5/C6 and anoxic brain injury, finally home with us after two years...) had a sacral decub the size of a chicken egg. It took a long, long time to heal, but is now a healed crater. The biggest problem with getting it to start granulating was that the depth made cleaning the slough (yellow stuff that oozes from necrotic tissue) very challenging. Finally, the hospital suggested using maggot debridement, and it worked! Pretty weird, but those little guys eat only the bad stuff, leaving a fresh surface clean of necrosis. Then a wound vac was used--a machine that pulls good blood to the surface to heal the wound. It requires the person to be on their side, but then you don't want pressure on the sacrum, anyway, with a decub there. What a roller-coaster ride, eh? I sure wish you the best, and a good support system to help you get through it. Deb's advice is right on--the more organized you get things, the more chances you'll have to spend time on the enjoyable things, breaks, quiet times, social occassions...the first year really does seem to be the hardest, as you become more familiar with routine needs and practice wading through setbacks. Two steps forward, one step back, is good to remember when tough days come. All this advice is good stuff--especially 'plenty of water'! Gotta wash away the stress junk that gets left in the bloodstream! Bless you! Tana

01-12-2006, 10:57 AM	#10
Obieone Moderator Join Date: Aug 2001 Location: Manitoba,Canada Posts: 5,603	Welcome to CC Monkey ..... I always preface my comments to newbies by saying ... I'm so sad you had to find us but so thankful that you did because I know how much support and info you will find here! You and your family certainly have been through the wringer ..... you just come here and vent any daggum' time you want ... my husband Bill is T5 post 8 years and is 58 years young .... we've just come through some serious medical issues as well and lived to tell the tale ..... again ..... when you look back you will be amazed at yourself .. you will look at the world so differently and marvel at the things people complain about relative to your life ... you will shake your head ... we're tough as nails somedays and jellyfish on others but we survive ... any way we can ... Obieone .. now if we can just get thru this dagum' Winter ... awww Prairie life !!