36 replies to this topic

[Vonstar]

My husband is currently in hospital with a C5 injury. He had his accident (fell off truck while loading it) almost 2 weeks ago but hasn't had surgery as yet as he's contracted MRSA and another virus. Drs won't insert any metalwork until he's free from infection. He's on a ventilator and heavy sedation in the interim.
I've been reading up on his condition as much ad possible to prepare us when he comes too but to be honest my heads frazzled. We have a 2 year old and I'm 39 weeks pregnant and as much as my heads accepted what's happened my heart hasn't. I've got great family and friends around me and his nurses have been great at giving out information.

My husbands one of life's active people - manual job, ski-ing, snowboarding, wakeboarding, paintballing, etc. His idea of hell is to sit still or read a book. I'm acting matter of fact to others but inside I'm scared for him and scared for our wee family but if I start crying I know I won't stop.

Posted this message hoping to find out how others who've been in his position have got on and to learn how to help him through the next few months.

Thanks

[rue2you]

I know this sounds so trite to say but please hang on to it because it is true. It all gets easier with time. But it takes TIME! Time to learn so many things, and time to see how he will recover. Time for not only him to accept this in his life, but time for you to accept it also. A disability belongs to the whole family. Maybe go ahead with that cry. You can be strong for him later when he is more with it. That precious baby will be here soon and you must take care of yourself also. It is very early and you will have lots of help and support right now with family and friends so take advantage of it!!

Hang in there! I will be praying for you and your family.

[Smileyblue]

I agree with Rue.. Cry.. Get it all out.. It won't do you or the baby any good to keep this bottled up inside you.. There's plenty of time for you to "be strong" later.. Right now, you can't do anything for him that the hospital staff aren't doing (besides loving him and visiting of course) but don't forget to take the time to take care of yourself and your unborn baby..

Wishing you strength when you need it, and comfort for you and the family..

[Soryfam]

I also vote for having the cry. It will let you release a lot of built up emotions and perhaps make facing all that's going on easier.

My SCI was caused by MRSA. I first had it in my heart and pacemaker and it caused blood clots to go to my lung. They had to do surgery to take out the pacer and the wires, which were embedded in my arteries. Lucky for me, they were able to get them out (it was touch and go). I had to go a month on antibiotics and test free for MRSA before they would replace the pacer, so I was either in the hospital or with someone at all times in case my heart decided to misbehave.
Meanwhile a little more than a week after the pacer was replaced the MRSA showed up on a pin in my foot. The immediately removed it and I was back on IV antibiotics. About two weeks later I collapsed, paralyzed from the waist down. THe MRSA had traveled to my spince even though I was on the meds. The immediately took me to surgery to stablize my back (T7 & T8 were totally destroyed by the MRSA). I was then in an induced coma for a month. About two weeks after the first surgery they went in and fused T5-T10 and did some grafts. I had a couple of scares in ICU, but finally they moved me first to the floor, and then to rehab. I remained on the IV antibitics for several months. I am allergic to most of the drugs they use for MRSA, so we have limited choices. The first and best med they use is Vancomycin, but there are many other ones out there.

I have contracted MRSA 6 more times in the last two years. My doctor thinks that it goes into hiding until the circumstances are right for it to reappear.
My point of all this is that it can be controlled, and it sounds like the doctors are treating your husband in a similar way I have been treated. My husband had MRSA once, and has never had it again, so it's very possible that thus could happen with your husband.
I don't want to sound like a PITA, but please be careful with the children around your hubby until the Mrsa is gone. It can be very serious in little ones.

You will definately be in my thoughts. Please feel free to email/message me if you have MRSA questions.

Let us know how he is doing. People here have so much experience. You are sure to get some great advice and words of wisdom.

Sandy

[Glor]

Hi Vonstar,

What a really difficult situation you find yourself in, but you need to start grieving as soon as you can, because this is a process and you can't really avoid all the feelings. Best to just cry. My experience is if you don't the hurt turns into anger and depression and illness and that can't be good for anyone.

I wish you the best with the baby coming and keep posting your feelings and what is happening here. The people here are amazing and will carry you through no matter what you're experiencing.
Take care
Glor

[Tetracyclone]

Vonstar,

I agree to a point with those who encourage you to begin the grieving, but with qualifiers. The first rule in life is to trust yourself, so if you feel that if you start you will not stop crying, then approach with caution.

Test the grief by putting your little toe in it first. Can you bring it up for a few tears in a family gathering or after church, but tell someone beforehand that you want some group- singing to go with it after 5 minutes of letting others listen respectfully? Can you do this with one trusted girlfriend, also having asked ahead of time for some positive, joyful time immediately after. Or just time it so that you have to go out to your daughter's daycare or a family dinner 15 minutes after you sit down and admit you feel devastated.

You will think of things. Grief is one more thing to be managed, and once you get familiar with your own feelings you will trust yourself to manage it. First rule is do not cry alone at first, nor at night when you will be alone until morning. this way you can just tell the monster, "You will get your turn at 10 am on Wednesday, so for now let me rest." You get my drift.

It WILL change you. There is no avoiding that, but see, your life changed when he fell off the truck and grieving is what you go through to get your mind to make peace with reality.

Meanwhile I cry for you. I was much like your husband, and am now C-5 through 7, but able to creep with a walker and take care of myself. If he has loved his body he can still love every new, tiny thing he learns to do with it- it's just a smashed-up, don't run-too-good body now.

Keep us informed. We care because we have been there.

[Vonstar]

Thanks everyone for your responses. I knew MRSA was a serious virus through the media but kind of forgot about it while trying to comprehend his injury. Just a waiting game just now I guess

[cas]

Hi
I'm really sorry to hear about your husband. What a frightening time you must be going through- especially with your baby being due. As everyone on here will vouch, each injury is so different, he may well still be a walker only time will tell when he has got through the mrsa. One thing though- if it is possible to put a positive slant on things- even if he is in a chair- there is still so much he can do. Yes life will be very different- but it's still possible to live the same life. I am a t11/12 para-a lot lower than your husband, but I am complete so I use a wheelchair at all times. My children were 2 and 4 at the time of my accident- but when I left hospital under 10 weeks later I was able to slot back into our life. I drive the children to and from school and our life day to day is pretty much the same. Please try and keep your chin up- you are at the start of a long journey, but there are so many possibilities. If I can be of any support please message me- we are not too far away. - and all the best with the birth of your baby. Xx

[Vonstar]

Losing the will to live here. He's got kidney failure and been moved to another hospital to start dialysis. He's still got the viruses, on a vent and the op to strengthen his neck has yet to happen.

I'm so so scared he's not going to make it.

[DannyR]

Sending a hug your way. Keep your head up. It's going to be a long journey and just know you are not alone there are many on this site who only want to help.

[S&W Winger]

Vonstar, you, your husband and family are in my thoughts and prayers...we are here for you anytime...

[Krazey]

Vonstar, on 10 January 2011 - 11:59 PM, said:

Losing the will to live here. He's got kidney failure and been moved to another hospital to start dialysis. He's still got the viruses, on a vent and the op to strengthen his neck has yet to happen.

I'm so so scared he's not going to make it.

Hi Vonstar. Just want to let you know that someone else is going through a similar experience. My ex was injured in October and is still in ICU trying to clear his lungs and get off the ventilator so he can eat and move on to rehab. His kidneys also failed recently about 3 weeks or a month ago...I lose track of time We're hoping he'll get his kidney function back but he's on dialysis for the time being. They weren't kidding when they said it is going to be a long journey...we're just biding our time waiting for the day he can breathe without any mechanical help. We're up one day and down the next and then back up, etc, etc. I'm wishing your family the best.

Krazey

[Vonstar]

Thanks everyone for your responses. Krazey you've given me hope! Every time I turned up at the hospital it was one spot of bad news after another - breathing on his own; 3 days later on a nebulizer, 2 days later on a vent,strep a virus, MRSA, fluid in his lungs, antibiotics not making a dent, breathing diminishing, kidney failure -I was worried next thing I'd be told is there is nothing they could do for him - I'm a proper little miss sunshine!

I just didn't expect so many setbacks he's 30, fit, non-smoker and rarely drinks. I'm learning fast this is a 1 step forward 2 steps back kinda process. On the brightside he's getting the best care possible - the Drs and nurses are on top of everything, giving me regular updates, he's just been incredibly, incredibly unlucky.

[rue2you]

Praying tonight for you and your family Vonstar!

[jscott92064]

I am thinking about you and your husband and family. If anyone has sent you flowers at the hospital, take some time to really smell them and "fall" into their beauty whenever you need to take a break and clear your head. That's what I did when my husband was in the hospital. Hang in there!

Edited by jscott92064, 11 January 2011 - 04:37 AM.

[Soryfam]

I'm sending positive thoughts your way. Also, you could turn things around and think that he has been lucky to have made it through so much. So sorry for the tough times. How are you and the baby and your other little one doing?

Sandy

[cas]

Really sorry to hear your news- hang in there- you and your family are in my prayers. Xxx

[Vonstar]

Thanks everyone just had a really lousy day and night yesterday. So glad I found this forum to vent my anger and frustration.

Focusing on the positives today, he's still here, he's not brain damaged and we can work on his independence when he eventually starts rehab.

Our daughter started nursery today and is doing great - she's so resiliant I could learn from her; and baby has yet to make an appearance - thank god!! My due date is Saturday but hoping I'll be late.

[jscott92064]

Vonstar, on 11 January 2011 - 12:07 PM, said:

Thanks everyone just had a really lousy day and night yesterday. So glad I found this forum to vent my anger and frustration.

Focusing on the positives today, he's still here, he's not brain damaged and we can work on his independence when he eventually starts rehab.

Our daughter started nursery today and is doing great - she's so resiliant I could learn from her; and baby has yet to make an appearance - thank god!! My due date is Saturday but hoping I'll be late.

I hope things start to smooth out for you - what an incredible journey you are on. Keep writing --we are all hoping the best for you!

[Kat24]

Praying for all of you and your loved ones. Hang on in there!

[wheelchairbling]

I feel for you, hon It's the uncertainty that's the most wearing. Once you know what you'll have to deal with, you can take hold and make plans again. Thinking about you...

[DannyR]

I was thinking of you this morning about how strong you and your must be. Times like this define who we are and you are going to be ok. One day at a time for now.Stay positive.

[snowqueeneh]

My husband is a C5/6 and he was all physical too. We use to go snowboarding together which is something I will always miss. I'm sure you have already figured out that you cannot "loose it" because you have your babies depending on you. That is what got me by... my two little boys (4 & 6) at the time of Pauls injury. There is nothing anyone can say that will make it eaiser for you. You sound like a strong woman so that is half the battle as far as I'm concerned. You are already looking for information and you have found us. What will be will be and you cannot control that. Right now you are in a "wait and see" phase of his injury and that is all you can do. My husbnad is now in a powerchair. He died once on his way to his surgery, he was soooo sick during his recovery. It is a long way before you will have a lot of time to face the "what now" phase. Just keep it together as much as you can for the babies, and try not to think too far ahead that this time because you cannot control what happens right now. Doctors will not know is total outcome until surgery is complete & his rehab begins. Then you will find out what your up against. My husband will never recover walking or hand function. I thought we were over for the first year... but now we are closer than before. He is quite an intellectual which is so different than before. But he stayed himself in his heart. He is still a very funny man. He still makes me laugh. We are still very much in love. It has been a long road for us and you too will have to travel it in time.

[jscott92064]

Snowqueeneh - your post has so much wise depth to it -- thanks -- it's given me a lot to think about as well.

[Vonstar]

Snowqueeneh you're post has given great comfort. I'm scared for myself and the kids but more so for colin. He has a big personality so hopefully (like your husband) that'll get him through - and maybe a very very hidden intellectual side will shine through too

just back from the hospital and been told that his kidney function has improved and his white blood cell count has gone down showing he's fighting the virus. Ruby started nursery yesterday and she's getting on great. she's still asking after daddy but not getting upset anymore. Some good news for a change!

[GoldenYears]

Vonstar, my hubby is C4/C5 Catastrophic. He also caught a viral infection in the hospital which is now thankfully gone. His accident was in May 2010. What I want to say to you is this: You are absolutely wonderful for doing so much prep and research into his condition. I also want to caution you to understand that reality can be way different and grossly miserable for you and him that first year after the injury. Right now he is in his early stages but as he progresses to other stages, a whole host of new and unforeseen issues that involve his behavior and emotional state will surely present. I must be frank in telling you, I do not know of an easy path through each of those stages. It's hell, pure and simple. His medical care will be a snap compared to the misery of his emotions.


You must have some help in the household when he comes home, and it will take a lot of help that will likely require some training for his care. At this stage you likely don't know the full extent of his injury so there is no way you can know how intensive his care will have to be.


I would also advise you to learn more about MRSA. This is a bacterial, not viral, infection and you will most assuredly have to use Universal Precautions when he comes home. Not only must you take extra precautions with his medical waste, you must keep his clothing, bedding and the house very very clean. And of course, you will have to wear gloves when caring for him. One of the serious issues with MRSA is patient compliance with the very long course of antibiotic therapy that is necessary for the cure. It can take 6 years to be free of MRSA, and that's with proper antibiotic treatment. As the MRSA appears to be getting better, patients will often stop taking their antibiotics and the MRSA will super charge and return. I urge you to do exactly what his Doctor recommends for that MRSA if he still has the infection when he comes home and don't buy into magical cures or worse, the dangerous rubbish of perioxide IVs or other hideous IVs some outside quack tries to recommend.

We had to do major household readjustments to accommodate his wheelchair, hospital bed, other equipment and literally cases and cases of stuff such as pads, gloves, caths, tubing, gauze, you name it -- our bedroom especially is like a mini-field hospital now. We also had to remove the carpeting. Later we had a massive flood and after that incident we went ahead and installed large industrial ceramic tiling on the floors. This for us, was the best thing to do, but it's very expensive. The upside is cleanup is a snap now. All our doorways had to be widened, ramps had to be installed outside, and equipment had to be built so we could get him in and out of the Yukon.

You will develop a routine as you go along, and things will get much easier with time, and yes even with catastrophics such as my husband, there has been improvement in his condition, and the overall condition of the family as well.

Family members are involved in PawPaw's care on a daily basis. This has been the best thing for us after a long and frustrating go with outside caregivers.

More than anything, PawPaw needed the reassurance we weren't going to toss him in a nursing home. No matter what, he is ours, and we love him, and this family will take care of him and that care will be proper care -- even if he is acting like the devil. This family does not throw people away. He also felt intimidated by goals set by others that he felt he could not meet regarding independence. As you go along, pay particular attention to the way he may be digesting what others are saying to him.

My best wishes to you, Dear, and please always remember we are here for you. We do understand what you are facing and what you will be enduring. It won't be easy for you, him or your family, but the loving hearts and thoughts of kindness are here on this board to help you along.

It won't be long, and you will be one of us!

Goldie

[cas]

Goldie- that was the kindest post I think I have ever read- informative and honest. Just proves the power of using a site like this and being able to speak to someone who has- been there and bought the t-shirt. Xx

[Tetracyclone]

Adding one thing to Golden years post regarding MRSA precautions:

They are most necessary to protect your young ones.

[Vonstar]

A wee bit of help needed. Colin's had a trachi fitted this evening and his sedations been dropped so he's awake again - yay a positive!

Unfortunately I can't lip read so he's had a very very frustrating couple of hours with me.
Has anyone got any advice they can give to help us communicate in this interim period?

[wheelchairbling]

On the communication:

1) Set up a Yes/No blink code, and ask him questions to narrow things down.

2) Get a piece of pasteboard and print things he's likely to need - water, food, pain care, information, grooming, "something else", etc. Then point at each until he indicates Yes. (If this goes on awhile, you may need to make several boards.)

3) Give him an update on his medical condition, the family, news he follows, etc. every day. He may be forgetting, with all the drugs and trauma.