anyone been through this??

[csalute]

Hi everyone. If anyone has been through (or you're loved one has been through) the following - I would love to hear your experiences.

My husbands annie ruptured on Aug 8th. So it's only been 2 1/2 months which I know is a short time in relation to the recovery period. But he's still SO out of it. He is awake and breathing on his own - but that's almost it. We finally got to put a speaking valve on his trach this week. He actually talked to me today. But it was all jumbled mess. First he listed off a bunch of numbers (which I am going to play in the lottery tomorrow - just in case!!). Then he said "don't take my seat". Then I asked him if he knew who I was and he said no. I asked him if he knew who the baby I was holding was and he said no. I told him that it was his daughter Cheyenne. Then he said 'Chey' - the first half of her name. Then he rattled off the numbers again. And that was it for the whole 2 hours we were there.

I'm just worried that the brain damage is really bad. I know there's no way to know if it's permanent or not - we just have to wait and see.

He still can't swallow correctly. They keep trying ice chips and all he does is aspirate and cough. So he still has the stomach tube.

So it's been 2 1/2 months and he still can't do anything for himself, still has the trach, still has the stomach tube. Is talking some but not making any sense.

Thanks
Cheryl

[NHDebbie]

Cheryl, I have not been in that condition so I will not be of help here. Has the doctor been ogf any help with questions related to your husbands recovery? Also, is he on pain medication? I'm sure that someone will help here soon.
God bless you Cheryl.

[miranda lipinski]

I have been through a double ruptured aneurysms. Time and Faith is all you can do. His brain takes time to heal. He is on his way by the sounds of it. Sometimes the medicine that they have you on makes you not make sense when talking to people. I was in ICU for 3 weeks. I don't remember anything, they tell me that I did talk, but most of the time didn't make sense. As for the trach and feeding tube. That can take a while also. Just Grab onto Faith and Prayer.

God Bless You,
Miranda

[sarahin]

Cheryl,
I have little information for you. I was lucky enough to have my aneursyms found before they ruptured. I just want to say how sorry I am for you and your husband. Please know that the brain is very slow at healing and time will tell. Being just off a ventilator I am not surprised he seems so confused. I worked as a respiratory therapist for 24+ years and saw this even in patients without brain injury. I'm sure once he is out of the hospital he'll keep getting receiving therapy to help him improve. I'm sure that someone else on this forum that has been in your shoes will reply and help you out on this.
Sarah

[GeePer]

Cheryl,

Time........ it takes time for the brain to recover, I can't stress enough about time and I know many people on this board recovrer almost immediately but some don't and I feel for you. Just give him some more time Cheryl.

Glenn

[Travelingdueo]

Hi Cheryl
Yes, I can relate to what is happening... I went thru almost the same with Ray ... When Ray got the speaking part in the trach it was real slow talking and they had to make him talk louder to get his same voice sound... which he did finally get with the help of the speech therapist and me telling her it sounded more like him now. Ray had the feeding tube in when he was transfered to the rehab but then he helped pull it out too.. they had to restrain him because he was always trying to pull the tubes, trache, feeding tube etc out. which he managed to pull the trache out in rehab and made the nurses nervous!
Memory of family... Ray went thru this he couldn't remember his mothers name, he would just say names at times he would say I was his mother, his sister and his daughter ( we didn't have any daughters!) this took place about 2-3 months after surgery he was in rehab.
He finally got the names together the bad thing is that the family wasn't there but they did talk to him on the phone so he heard the familar voices we were far from home and no family to visit.
Still after almost 20 months he will say something like where is Becky and I say look I'm right here and he would say no the other Becky or he now says oh you are Becky..

One thing to try is to have a small photo album ($ stores) I made him with family and on the bottom picture page I would write the names of who was in the picture this way when you are not there the nurses can help him relate to the photos of who is who.. Ray still looks at his.. its just a 5 x7 size so he can keep it on a table.

Eating ice chips.. it took Ray forever it seemed to get ice chips .. actually it was on his 50th birthday that he got it for the first time.. and he made me nervous just chewing it.. or trying to suck on it..

I remember when he would get the swabs to moisten his mouth and they let me do it and he decided to chop down on it and tore a piece of it off and trying to get it out of his mouth .. talking about getting scared!
He had this thing about wanting to chew .. before he got ice chips.. he had a ball and it was orange and I think he tought it was food and tried to take bites from it.. His thinking skills wasn't there yet.

I also remembered when the speech therapist first came in to evaluate him I had to tell her to slow down he couldn't understand her at first.. I had to talk slow with just a few words for him to understand what I wanted. or asked him to do.

He didn't stand for 3 months and still couldn't do it on his own. they didn't have therapy at first until I asked when he was awake .. I thought they would still do range of motion and stuff but all they did was turn him in the bed.
If he is still in bed... you can get a small ball and have him squeeze it with his hands to keep the muscles working also have him try to throw it .. Ray couldn't even do that at the time.. so if he could just hand it to me that was good.
I brought magazines and a picture book on the history found it at the dollar store to help with memory.. some of your daughters toys may come in handy to help with muscle building and matching.. like blocks naming colors and stacking and having him build exactly like you did.. Ray couldn't do this at first either this is one of the tasks they did in OT while in rehab.

I know how it makes us feel when he don't remember who we are but hopefully it will get better just keep your Faith and work with him... There are times when Ray would think that we just got married and we have been married for 27 years.. If he says we just got married last year I say yep thats when we started our new life!


Oh, about talking and not making sense.. Ray did that too.. he would talk to people on the phone and just started to rattle on about all kinds of things and they just didn't know how to talk to him except his sister who worked in a hospital.. He would talk to the nursing staff and not make sense... his words would be all mixed up.. it did get better he would start a converstion now where at the begining he would only answer when asked.. The brain can't find the right word for some objects.. I had flash cards he couldn't tell me that the picture was a lady bug, or the leaf was green by looking at it. But finally he master that..

I was determine to work with him to get him past that and I found all that I could to make him work out everyday.. now 22 months later all I really see is some long term memory that is gone but its a hit and miss days short term not retaining that hasn't really improved except I see new things later that is getting stored in long term.. he has mastered the word finding ..sometimes has trouble but then again I can't even think of the right word and use the wrong word ... So if you keep working with him and just don't give up he will show more as the time goes by..
When Ray had his last MRI they said that there was a lot of brain damage and impressed on how well he was functioning.

Sorry I rambled on but I hope this helps and if I can help anymore let me know
Just hang in there

"It will get better "... That's all his Neuro Dr would tell me when he came in to check on him in the ICU

[GerryP]

Becky,
Im sorry you have gone thru so much of what Cheryl is going thru now. But reading your answers to her questions makes a person remember what this board is all about. With your advise in mind Cheryl will be able to help her husband even more.

Cheryl,
I hope you keep the faith and pray. That always helps too.
Gerry

[GeePer]

Cheryl,

I'd like to also add I didn't know even who I was for 2 1/2 months and then I woke up one day and knew who I was but had no clue where I was. If you've read my story it was a long long road before I shed all the beurocracy(sp?) thanks to a good neuropsychologist. So be prepared.

Glenn

[Cajsa]

I am sorry for what you are going through. I had a ruptured aneurysm in September 2006, was taken to Houston by Lifeflight helicopter and operated on the next morning. My aneurysm was clipped.

After a long time in ICU (I also had vasospasms), I woke up and started to understand what had happened to me. I tried talking to my husband; he could not understand what I was saying. I thought I spoke clearly, but in reality it was just sounds with no meaning. I even tried to write what I wanted to say, but that did not work either. About two - three months after surgery I could whisper but not talk. It took a long time before my voice came back. They told my husband that my vocal cords had been damaged.

I am now doing fairly well. I had a good singing voice before my rupture but it still has not come back.

It is still very early in your husband's recovery, and he needs a lot of rest. I slept a lot during my recovery, and I still get tired and sleepy at the end of the day.

I hope things get better for you very soon. Try to be patient - it's not easy I know!

Take care, all the best!

Cajsa

[Kyria Dylan]

Hi everyone. If anyone has been through (or you're loved one has been through) the following - I would love to hear your experiences.

My husbands annie ruptured on Aug 8th. So it's only been 2 1/2 months which I know is a short time in relation to the recovery period. But he's still SO out of it. He is awake and breathing on his own - but that's almost it. We finally got to put a speaking valve on his trach this week. He actually talked to me today. But it was all jumbled mess. First he listed off a bunch of numbers (which I am going to play in the lottery tomorrow - just in case!!). Then he said "don't take my seat". Then I asked him if he knew who I was and he said no. I asked him if he knew who the baby I was holding was and he said no. I told him that it was his daughter Cheyenne. Then he said 'Chey' - the first half of her name. Then he rattled off the numbers again. And that was it for the whole 2 hours we were there.

I'm just worried that the brain damage is really bad. I know there's no way to know if it's permanent or not - we just have to wait and see.

He still can't swallow correctly. They keep trying ice chips and all he does is aspirate and cough. So he still has the stomach tube.

So it's been 2 1/2 months and he still can't do anything for himself, still has the trach, still has the stomach tube. Is talking some but not making any sense.

Thanks
Cheryl Hi. I had a similiar experience after surgery. Before surgery i was average at math,but after surgery i became a math genius! the doctors and nurses at the hospital were amazed at my math abilities as were my friends and family members. there didn't seem to be a math problem i couldn''t solve. but i could not remember my name and had to be convinced what they were calling me was in fact my name. four days after surgery my brain hemorraged,not at the surgery site but at the back of my brain and i lost the math ability and did not return to average at math but still struggle with it. it took a month to accept the name they were calling me was actually my name. i also experienced another very unusal talent that the doctors said only a few cases have been documented. i am not going to reveal that due to the studies being done on it. (p.s.) how did the lottery numbers turn out? keep using the same numbers...... God Bless Kyria Dylan

[Suzanne*Canada]

HI CHeryl how are you doing?

AS you know everyone progresses at a different pace, but my Dad didn't eat anything for about 6 months because he couldn't swallow correctly , he lived on a feeding tube and then eventually Ensure....but then slowly but surely with perseverance he did eat normally again but oddly enough he didn't ever like the same things he used to... he used to love steak and baked potatoes.. then would gag on them after the rupture.. he loved fresh Italian bread... but would gag on it after.

My Dad was given less then 3% chance of surviving his first operation... but he did and then they at one timetold us "this is as good as it gets, he will never sit up alone, walk alone , feed or do basic personal care for himself.. take him home and get used to it"... well I tend to be a weeeee bit stubborn and I pushed for more therapy and rehab ( he went back to rehab 2 years after his rupture with our insistance AND HE WALKED OUT ON HIS OWN TWO FEET!!)

This is a LONG and HARD road for the BOTH of you, but hang in there and keep pushing, get b***** if you have to.. make sure he is getting ALL the therapy he can, even if they say it won't help him, tell them to try it anyway.....keep a journal in his bedside table and explain that you want his routine written in it including any therapies he is getting and for how long and what the outcome of that therapy for the day is... then you monitor it and him and see if you notice any small improvements.....

keep fighting, you can do this and we are here to help you !!
HUGS
Suzanne