Brainstem Stroke patient

[myhome]

Jocelyn,

 

The doctors don't know everything, they just get you ready for the worst case senario.

My family was told I may never walk again after my stroke June 22,2006. Well they were wrong, I've worked so hard that somedays I wonder if it's all worth it ( beleive me it is)

On May 24, I go for my driving roadtest, when I get my licence back one of the first places I'm going to is the hospital to show them they were wrong, and to give the other survivors hope.

Talk to him, read him cards he's gotten, even the paper, anything that will tell him that the outside world is waiting.

 

I wish him well, tell your family and especially him that he's not alone, we're here for him.

[sisternlaw]

update about David...from Sisternlaw...

David is still not conscious. He is on a trache(sp) and a feeding tube.

However he is making progress. He is moving his tongue and eyelids

everyday now. He moves his legs and shoulders and turns his head

from side to side. He coughs and scrunches up his face.

He had been in the hospital for over 30 days so the hospital was pressuring my sister to get him into another facility.

Not knowing what to expect, my sister Julie checked out a couple of

care rehabilitation centers...which we quickly found out just means "care home." He was transferred last Thursday to a care facility

which claimed to have all of the supplies and medical tools that David had at the hospital. They even sent three women over to the hospital

the day he was to be moved, to reassure my sister that they were all

ready for David and that they had been anticipating his arrival.

He has to have a certain type of trache with a vaporization feature to

keep him from getting infections and pneumonia. Also to keep the phlegm from building up. When we arrived at the care place, they had

no supplies. No trach set up, no vaporization feature...nothing.

No alarms, no regulating read out to keep track of his oxygen level and

his heart rate. Nothing.

My sister panicked. All that day we made phone calls trying to get him

back to the hospital...or into another place...but the hospital could not do that unless it was doctor ordered. The doctor was not answering our

phone calls. We left many distressed messages, begging the doctor for

help. The care facility proceeded to rig up some sort of oxygen tube

"thing", and let us borrow the one and only heart oxygen monitor that

the place had...with the finger clip. He was not doing well, his oxygen

level was low...he had a fever... and his color was strange.

We were not able to get him into another facility until the following week, because of the week end.

We spent the night with David in this terrible place and prayed.

The next day was worse. They changed his tube to another style...which

did nothing...he was soiled ...and no one available ...his tube was clogged and full of phlegm. We were unable to do anything. We had a couple of meetings with the management...to discuss "our concerns."

Later that night, as we prepared to spend our second horrible night

in the place, the nurses were attempting to adjust David's tubing, when

he began gasping for air and turning red. We were about to call 911,

but they were able to get it back together and David calmed down.

The nurse then decided to take his blood pressure. It was quite high and

concerned her enough to call the doctor. She came back to the room

and said that she didn't want to alarm us, but that the doctor had requested that David be moved back to the hospital immediately.

Halleluiah!!!!!! He was transported back to the hospital Friday night at

around midnight. He was stabilized in a few hours and finally safe.

The relief was so great for us all.

It is now Tuesday. My sister has been in touch with a good insurance company that is walking her through the steps to home health care

for David. They live only a matter of minutes from the hospital.

She is getting the benefit for her home health supplies and equipment

including an oxygen/heart monitor. She will have nurses to assist on a

daily basis. And if there is an emergency, an ambulance could be there

in a matter of minutes.

What a relief. I know she will need a lot of help, but it is so much better

than trusting David's life to a care home where he would most likely

die. I will keep you all updated on any more progress.

Thank you everyone for your support and encouragement. Sisternlaw

,

[bstockman]

YIKES... I would turn the nursing home in.. That is just wrong to assure someone they have the equipment and capability to take care of a patient. Glad he is back at the hospital and that your family is getting the help they need.

 

Will keep you all in my thoughts.

[dstraugh]

Joceyln,

 

Thank goodness your brother-in-law is now getting proper care. Be sure that the everyone follows through for the arrangements and care of David once he is moved home. That's wonderful he is having some response. Keep talking to him, explaining what is occurring every step of the way as others have said as he can still probably hear what is going on around him.

 

Take care and ((hugs))) to you and your Sis.

[kanderson]

hi jocelyn, thankyou for the update on david. i am so sorry incompetent people and places had david in their care or lack there of, i should say. glad he is back at the hospital and showing some improvement. i'm sure everyone will be happier once he is home with home health care. maybe that will bring david out of his coma, knowing he is home. i will continue to pray for all of you. take care of yourselves and god bless you all.

kanderson

[sisternlaw]

Thanks so much all of you for your support. Yesterday I filed a complaint with the BBB about the care

facility. Who Knows how many other people have been given false information...potentially life threatenting.

We are looking forward to getting David home. I will keep you all posted. sisternlaw

[lady k]

wish I could say just the right words to help you, but since I can't I will pray for david and you whole family. :hug:

[lorrainelm]

 

Hi,

I just saw y messages.

I had one fixed eye when I was conscious and it was nerve damage that fortunately regenerated

over time.For me it took about 6+ months to regenerate,but every situation is different and you can't

compare one to another with stroke,but still have hope and never give up on hope.

Take Care

lorrainelm

[sisternlaw]

Thank you Lorrainelm, that is encouraging about the fixed eye thing.

Both of David's are fixed and he is still unconscious. My sister is attempting to bring him home today at 1:00. She is very nervous.

She does have help and the hospital has equipped her well...but David

is a big man...and she is only 5'2. ...125 lbs.....it's kinda scarey.

Still anything is better than the care home he was in.

Thanks to all of you for prayers. I will keep you posted on his progress.

Sisternlaw

[lorrainelm]

 

Hi,

The nurses or medical staff that are home care can teach skills to family in repositioning and turning him.

You don't have to be big and strong,just have to know proper tequniques to avoid injuring patient and

caregivers at home.

Take Care

Lorraine

[kanderson]

hi jocelyn,

i am so happy david is coming home. learn all you can about home health care to help yourselves to not get hurt. good luck and i hope david comes around real soon. i will keep you all in my prayers.

kanderson

[sisternlaw]

Hi all, David did not go home yet. He has had delays because of some changes the doctor has made. He had a tube going down his nasal passage into his intenstine...the tube has been changed to another better method for his feeding. He had to have the surgery last night.

He did fine...but delayed his coming home. Actually a blessing...it gives

my sister a littel more time to prepare herself. Will keep you all posted.

I have been copying and reading these postings to my sister. They are

encouraging to her. Thanks for your prayers Thank you all. Sisternlaw

[ddaul]

Dear Sister in law

 

I suferd ab rainstem stroke but a clot. I learned the hard way 13 yrs ago and Was 28 yrs old. I walked in the ER and I was slurring my words and very dizzy. they diagnose me as a drunk kid and the nightmare began. I guess a very long fight exsisted to transfer me to another hospital. The fight was a success but for me it was too late the other hospital stabalized me but the doctor gave me two weeks. In those 2 weeks doctors treated me. I guess I was in a coma but survived. Here i am 13 yrs later.

 

MY point is you never know. I understood, felt and was fully aware in those two weeks. You or the doctor don't know what brother is feeling right now. In any event treat your brother like he is alive and living give him a reason to keep fighting. Sounds like that doctor has no idea to treat a stroke or that hospital can't accomidate that type of sever stroke. if he keeps beating the odds, Keep us up to date. keep your chin up

[lady k]

I may be a little slow just dawned on me to watch for last person who posted to see if you posted on David, we are all rooting for him,

glad to know he got a better feeding tube and that he went through surgery fine, I will keep him in my prayers and it is great he will have such support from his family

, hope to meet both of them on line here someday, please keep us posted.

[sisternlaw]

Hi everyone...David is home...still in coma. Some changes as far

as movement and facial expressions...but not enough to encourage

my sister. It's so hard for her. You all know. He should probably

be in a care facility, but she just can't do it. I am concerned for the

wellfare of my sister. She can't keep this up. It's killing her.

Please pray. Thank you. Sisternlaw.

[dstraugh]

Hi,

 

Sorry to hear that David is still in coma - I'm sure he does realize he's in his own home. Is your Sis getting "her" time? Tell her not to give up her faith and hope. Even the smallest changes for the better are worthy of celebration. You all remain in my thoughts and prayers as you are going through these difficult times. :hug:

[kanderson]

hi jocelyn. please tell julie we are thinking of her and david. i know how she must be feeling. but don't give up on david and keep talking to him and i agree with donna, i think he knows he is home and the comfort that will bring to him. just remember he wasn't suppose to be alive according to the doctors and now he is home. god is watching over him and the family. keep us posted on his progress. i look forward to your updates. be sure julie gets some time to herself.

kanderson

[bstockman]

Hi Thanks for the update. While David is home, maybe you can take some time to look at care facilities, incase he needs to be moved.

 

Julie HAS to take care of herself or she will be in a bed next to him.

 

It is sooo hard to watch your loved one with illness and feeling helpless.

 

Best wishes and prayers to you all.

[sisternlaw]

Wow, you guys are all so encouraging. You have no idea how much just

knowing that you really believe there is hope for recovery is so amazingly helpful. I have been guilty of feeling like I should just pray that God will take him...and let my sister have rest, but I know that is

not what she wants. I don't want that either...but if we could just know

how much longer. One more positive though. Julie told me this morning that Davids' eyes are now moving a little from side to side.

They do not seem to be fixed as they were before. Still he is not conscious...at least he cannot express it if he is. He has also been moving his lower body around as if to get more comfortable. All purposeful movement...not just REFLEX. I guess there is still hope.

Thank you all...you are such a blessing. God is using you to be hope to

hopeless hearts. I hope he will use me to do that soon.

Thank you ...all of you. Jocelyn (sisternlaw)

[lorrainelm]

 

 

 

Hi,

I am a nurse who had a brain stem stroke and i would recommend trying headphones with radio station or musice he used to like as this stimulates and sometimes people come out of comma this way,depending on

the amount od damage.

I think it would be worthwhile trying.

Also hearing is the last sense that leaves someone,so he would be able to hear if not respond.

Take Care

lorrainelm

[kanderson]

hi jocelyn,

great news, sounds like david is trying to come back. when the brain is ready, it will be automatic. today in news, a man in poland woke up from coma after 19 years. i know you dodn't want to hear that. have you searched on the web about coma's, perhaps they would have some info to help you and your sister, try and help david come around. just a thought i had. i continue to keep your family in my prayers.

kanderson

[Juli]

Hi ...sisternlaw (jocelyn) here.

My sister Julie has asked me if I would inquire as to whether or not anyone knows if the "fixed eye"

is an indication of anything....is it just part of being in a comatose state? Or is it more serious?

David has those fixed eyes. It is very disturbing to her. Can a person become conscious again after

having the eyes in that condition?......I read that it means the brain stem is not functioning...

However..other things that are controlled by the brain stem have been working.

Do people with fixed eyes recover from the comotose state?

 

 

Hello

 

My brother had a brainstem stroke on august, and has been locked in since. In the first month his eyes were fixed too and he could respond to nothing not even follow us with his eyes , thent we started to encourage him to blink, and very slowly he started to blinbk...now his eyes are normal.

The nurses told to keep away from his eye range to force him to look at us....it's hard but you can always try!

 

Only about 2 months since the stroke we were certain, that he could see, ear...!! So keep the faith! Miracles do hapen!!

 

Juli

[sisternlaw]

Sisternlaw here .....sorry so long since i emailed you all. I am not on line at home. I work in a school and I am back

from summer vacation. Well....David is still hanging in there. He is still home. Yesterday marked the 5th month of his

coma. I have never known anyone who was in a coma this long. Sometimes it appears that he is in a state of semi consciousness....he responds to touch and moves around alot. He gets coughing fits when my sister is leaving the house

or when she comes back from being gone awhile....so how does he know that if he's unconscious? Yet he still does not open

his eyes or move anything if requested to do so. It appeared that he was moving his thumb a couple of times this summer

when Julie would ask him to ....as a yes or no sign....It's not consistent though. He has remained very healthy...with the

exception of his feeding tube being clogged once. He had to be admitted to the hospital in order to have it fixed.

That has been all though. He is no longer the 280 lb man he was though. That is sad to see his arms and legs getting so

thin. It is easier however for my sister to lift and clean him ect. .....I can't imagine though, she won;t let anyone else take

care of his cleaning needs. She does have one nurse come in twice weekly to take his vitals...but that's all. She does

everything else. There is no telling her to take it easy or let someone else do those things.

She does get an hour or two away a week when David's parents come to stay with him. Also Julie's daughter in law takes

over periodically. Julie gets out to go to the store, or to lunch ....but not much else.

She has been able to keep her job at the school near her house by doing some of the work at home.

She continues to have her needs provided miraculously.....and that's the only explanation. She has always had the

mortgage payment every month. .....We are just waiting and waiting for David to open his eyes....anything.

Prayers get monotonous after awhile....but we don't give up.

I just want my sister's hell to end........I want her to have her husband back. This just can't continue.....

I am hopeful...and tired....and it's just always there. Thanks for giving me a place to vent. sisternlaw

[kanderson]

joceyln, no one ever said that this will be an easy situation, so please hang in there. keep motivating david as best you can, it sounds like he is trying to come out of it sporadically. i'm glad julie has some help from family to help her get away for awhile. but she should let the nurses help her out more, that is their job and they want to help her. she must be doing a great job in caring for david with keeping him turned and cleaned to prevent bed sores. she has her hands full with all she is doing. i understand how this is so hard on everyone, but don't give up. he is doing so much better than the drs told you at first, don't forget that. it takes time for the brain to heal and regenerate new pathways. i continue to keep your family in my prayers daily. god bless you all. please keep us posted on how he is doing.

[dstraugh]

Jocelyn,

 

I 2nd what Kim said. As well, it's also important to move his limbs (range of motion) to reduce deterioration until he comes out of the coma and can work at the motion himself. Hang in there. Let Julie know, that there are carers who are trained in bathing, etc to help her. She is going to burn herself out even though she does get intermittent breaks from family members. Send her our love and best wishes.