[jenie123]

My dad has been partially disabled for approximately 8 years. After his 4th back surgery, he came out of the hospital unable to walk. Over the last few years, he had regained mobility and was able to walk short distances (with the assistance of a walker), dress himself, and get himself out of bed. A week ago, he fell and broke his back. His spinal cord and vertebrae were severed between the T5-T7. They were able to operate and fuse his bone together, but did not re-connect the spinal cord. They just, in essence, created a sleeve on each end and stitched it up to keep him from leaking spinal fluid. The surgery was on Thursday and it is now Sunday. He is still on a ventilator. They've taken him off all pain meds in order to "wake him up" so that they may attempt to remove the vent, but when he does begin to wake, his blood pressure skyrockets, his heart rate increases and they give him Adavan (an anti anxiety) to calm him, which therefore puts him back to sleep. We really just don't know what the future holds. Can anyone give me advice on what is to be expected if he's unable to come off the vent and they put him on a trach? Also, I touched his feet and he responds...how is that possible if his spinal cord is severed? They say he's paralyzed from the nipple line down. He's got a lot against him. He was already on Cumidin, is a diabetic, has kidney problems and weighs about 450lbs. I really need someone to give me an idea of what his life is going to be like. And what we are looking at to take care of him at home. My parents are very low income, but we do not want him to have to go to a nursing home. He's only 58. Please....any input or information anyone can provide is extremely appreciated. We are all just in shock and so confused. We can't seem to get any real answers from the docs.

[Ratticis]

If it were possible for them to reconnect the spinal cord this site probably wouldn't exist.

Anyway, I'm a T4 completeand within the first 3 months I had some reflex movements if someone touched the bottom of my feet too. Your story really strikes close to home for me. Simaler injury, I'm also diabetic, and my dad is pushing the 450lbs mark at age 52. Don't expect anything from the docs, especially the ones unfamilier with SCI. Things do get easier with time, and if you look back a year from now you'll be amazed at the progress (hopefully. I was). His weight will obviously add some more dificulty, but don't ever forget that he's still the same person he always was. I'll write more later, but am stressed for time right now.

Best of luck!

[Trinity]

From an sci point of view there should be no reason why he shouldn't be able to get off the vent, I suspect his biggest issue will be his weight. The increase in blood pressure could well be AD or stress response also maybe something as "simple" as pain. Spinal surgery HURTS and it will still be bloody painful after 3 days. Is he getting any sort of pain relief? I defy any of them to wake up appropriately after 3 days with no pain relief.

Sometime the breathing tube can cause severe distress and, if it looks like he is not progressing after a week or so then it may be a good idea to get a tracheostomy temporarily for his comfort and to enable a slow more controlled weaning from the vent. Also it makes it a lot easier to keep his airways clear and prevent chest infection which are more likely the longer he stays tubed on ICU. A trach also means that he can begin to mobilise and start some basic rehab, even if it's just sitting out of bed or an hour.

Unfortunately his weight and pre-existing health problems are not going to help him but for now only concentrate on the things you can do something about.
Take each day at a time.
Good luck

[wheeliebear75]

I've got the pretty much the same things to say as Trin.

If your dad had fallen out of a tree & broken his back & then had surgery I would expect he would be in LOTS of pain.......only thing he is missing is the tree but everything else is the same. Ativan wont help pain control it just as you said puts him back to sleep. I would get pushy if need be about whether any pain is being addressed by the Dr.s in charge. Best wishes & keep us posted.

[jenie123]

Hi all and thanks so much for the information. I have forwarded this website to my sister and showed it to my mother. I think it's such a wonderful place to be able to get information straight from the source...those that are living with this injury. They were able to take my dad off of the vent today. They say he hasn't had any meds for anxiety or pain since 2am this morning (and then it was just ativan). He is still yet to wake up. I know that the pain meds and anesthsia can still be in his system due to his size, but just can't believe that is what is causing him not to wake. We just keep hoping and praying that he will wake up. His bp has been kind of abnormally low...92/52, even when being turned. They say they are keeping an eye on that, but it concerns me somewhat. I just keep trying to focus on the good....he's off the vent and breathing on his own. I'm just hoping he will be able to stay off... and to do that, he will need to wake up so he can assist in getting some of the gunk out of his chest to avoid pneumonia. His white blood count is a little high, so they've put him on antibiotics and they say his kidneys aren't functioning as good as they were yesterday so they will keep an eye on that as well. It just all seems like so much! I just don't want him to be in pain and am hoping that if he's not waking, it's because his body is healing and he's comfortable. Thanks again for all of the support and input. Bless you all!

[Ratticis]

Good to hear he's off the vent, hope everything else improves too. Pressure sores are a big problem made worse by his size and not being conscious. Make sure they are turning him regularly, cus, trust me, pressure sores are no fun and can cause tons of other problems!
Another thing I ment to say before, if he says something hurts, don't go "you're paralyzed, you can't feel that, you just want drugs" had an asshole doctor do that to me. Found out later I had 3 cracked ribs that healed back crooked now. But I can't feel that, I'm just a druggie . . . Jackass!

[jenie123]

Thanks, and yes, I know...they turned him yesterday and he already had a spot on his foot for rubbing on the foot of the bed. I had to point it out to them and that's ICU. Heaven help us when he goes to a regular floor. We're really going to have to watch him. As for the pain meds...believe me, if he says he's in pain, I'm going to do my damndest to get him something! I DO NOT want him ito suffer in pain. Just really hoping he gets to the point to be able to tell us if he's in pain. Praying he'll wake up. Really don't understand why he's not. They haven't given him anything in over 24 hours. He's breathing on his own, but they put the feeding tube back in. Feel so helpless. Just gotta hope and pray and have faith that he will beat this.

[Ratticis]

ICU = Ignored Care Unit

Keep us posted

[jenie123]

Dad is home. Now the really hard part. We are trying to care for him, but nobody seems to be able to tell us exactly what he needs, other than the very basics. Any input?

[ClaraTaylor]

jenie123, on Mar 17 2010, 05:28 AM, said:

Dad is home. Now the really hard part. We are trying to care for him, but nobody seems to be able to tell us exactly what he needs, other than the very basics. Any input?

Jenie,
Can you update us on his condition (I may have missed another post somewhere) please so that we can help you better? Why is he not in rehab now learning to look after himself? Did he wake up fully without any complications?

This post has been edited by ClaraTaylor: 17 March 2010 - 07:29 AM

[jenie123]

The docs had initially said they were going to send him to LTAC, which is some kind of longer term ICU. But they said that he had gotten better so was too well to go there. They had also said that he would go straight to rehab from the hospital, but that didn't happen because they said he wasn't well enough for it. So basically, they sent him home in an ambulance. My sister's and mother haven't been given any real instructions on how to care for him, other than the very basics. No information on stretches, massages, exercises or anything that can make his life any better and get him in the condition to possibly go to rehab. Mind you, I think it's because he's on Medicaid (which is basically welfare) and they just don't have the money to help him. I'm really at a loss as to what to do. I think they would prefer we just put him in a nursing home and wait for him to die. And it's really frustrating. I don't want to see my dad just waste away. They didn't even explain the bowel situation. Right now he has diahrea but we have no idea if that will continue or what exactly to expect. Sorry if I'm rambling, I'm just really at my wits end and it seems this website is about the only "real life" info I can get.

[mcferguson]

How are things going? Any improvement?

[jenie123]

mcferguson, on Mar 29 2010, 11:41 AM, said:

How are things going? Any improvement?

Well, it is still day by day, and my family is giving him as much care . He's still waiting to hear whether or not he's going to rehab. He's already gotten several bed sores and really hates to be turned onto either side. Says it is very painful. Which makes it even harder to get the bed sores under control. He says it hurts to sit up very much...so it's really a matter of keeping his pain managed so he can begin the road to some kind of normalcy. I'm still super worried. It is a 24 hour a day job, but I can't seem to convince one of my sister's of that. we've been butting heads over his care. I'm in another state, so am not there to assist, but I still feel like I have the right to question and help decide what is best for OUR father. I don't want to fight with them back home, but I am so worried that he's just not getting the care he needs.

One of my biggest frustrations is that I feel like my family is just having to "wing it". They've not been given any specific instructions and don't really have any resources to get information. He's been without outside help for about 2 weeks, and a new home health agency is supposed to start this week, so I'm really hoping things will improve.

Thanks for asking btw. It's great to have others who have been thru this to vent my frustrations to and get advice from.

[mcferguson]

Sorry to hear he has pressure sores, they can be pretty serious. He needs to stay off of them for them to heal and that can take a while, some folks battle them for over a year. Since he spends so much time in bed, it would be good to get him an alternating pressure mattress (I used an Effect 5000 mattress, which overlays any bed and cost $500) to prevent future sores and help with the ones he has.

I developed pressure sores on the back of both of my heels while in the hospital and it took 2 months for them to heal. I "floated" my feet with a pillow under my calves while in bed to relieve the pressure, went to a wound care doctor weekly to remove the dead skin, and a nurse came to change the dressings every other day and put a medicine called Prisma in the wound to stimulate tissue growth.

As far as information goes, does anyone else have access to a computer? Send them here. The home health agency should help, but keep asking questions. It is pretty much day to day for the first several months, but it does get easier.

[Soryfam]

Wow, you all have been through a lot in a short time. If they say he should be at home then he definately should be getting visits from a home health nurse, physical therapist and occupational therapists. These people can also teach your family how to help him. If medicaid is being slow someone needs to get pushy. Sometimes there are non preofit agencies that will advocate for a person. Is your dad a verteran? They could possibly help him if he is.

Good luck to you. Things will be breighter in a year. I know it doesn't seem like it now, but time does help.

Sandy

[jenie123]

Thanks for the encouragement! Dad went to the hospital last night. His blood sugar had dropped to 32 and he's had a fever off and on for a couple of days. They are going to treat the infection and debrief (sp) the wounds while he is there. We are really hoping he can go straight from there to rehab, but we'll see. The lift is on hold, due to the doctor feeling like if she writes the prescription for that, then he won't get approved for the rehab. It's all so frustrating. The beurocracy. We are still waiting on the mattress too, as they say he has to have 3 months of documented bed sores before they will authorize it..which is a bunch of bologna. So, I'm going to try to come up with the funds to just purchase the mattress myself as I know it will be alot of help. I'll keep ya'll updated on his condition. And again, I truly appreciate the support! This website has been a Godsend!

[Soryfam]

It sounds like the hospital is the best place for him to be right now. Do you know what kind of infection he has? I've had a lot of MRSA infections, and these they need to really, really stay on top of. (Of course all infections are bad). It's great that you can get the bed for him. It also sounds like his doctor does want to get him into rehab, so this is good also. I certainly think having inpatient rehab before coming home is much better than vice versa. He's lucky to have such a loving family to support him. Best wishes.

Sandy

[Stand117711]

Any new updates?

[MikeFatty]

Ratticis, on 03 March 2010 - 07:43 AM, said:

Good to hear he's off the vent, hope everything else improves too. Pressure sores are a big problem made worse by his size and not being conscious. Make sure they are turning him regularly, cus, trust me, pressure sores are no fun and can cause tons of other problems!
Another thing I ment to say before, if he says something hurts, don't go "you're paralyzed, you can't feel that, you just want drugs" had an asshole doctor do that to me. Found out later I had 3 cracked ribs that healed back crooked now. But I can't feel that, I'm just a druggie . . . Jackass!

the same thing happenned to me except they found 5 cracked ribs!!!! freakin 5!! it took them 3 weeks to find that. even though every time they turned me i cringed in pain. i thought it was bull. and we threw one hell of a stink.

[pinkcloud]

[quote name='Trinity' timestamp='1267480652' post='151273']
From an sci point of view there should be no reason why he shouldn't be able to get off the vent, I suspect his biggest issue will be his weight. The increase in blood pressure could well be AD or stress response also maybe something as "simple" as pain. Spinal surgery HURTS and it will still be bloody painful after 3 days. Is he getting any sort of pain relief? I defy any of them to wake up appropriately after 3 days with no pain relief.

Truly awful you are right Trinity - I can empathise with this part of the story . My heart is with you all