HEMORRHAGES FOR DUMMIES do they have 1 of those?

[megalina]

hello I'm newly registered here my fiance had a massive hemorrage oh hmmm 33 days ago. I must say this was quite a shock to me in so many ways. For starters I should say what I do for a living : I'm an in home caregiver for disabled patients .....stroke's dealing with therapy (for say something such as an imoble hand thats curling in I stretch and exersize it as not to make it worse) speech and brain therapy (scrabble is a great game memory card game too) speech therapy tools to help functioning with brocca's aphasia. Also I help out with personal cleaning for those unable to do for themselves. I have a quad patient now I attend when he needs .....c-4 incomplete just makes him not feel temp or touch from the nipples down he says but he can get up transfer himself from chair to toilet or bath chair.........just can't lift his heavy legs over the tub.

 

well you would think someone with this kind of experience would know whats what and jump into action asap- right? well I didn't with my fiance and I will always wonder if I had gotten him to the RIGHT hospital sooner would things have been different. We just had a beautiful 3month old daughter who woke me as scheduled at 5:30 am. It was gilberts day off from work so he lay sleeping as I take critter out of the room to change and feed her. I put her back sleeping next to daddy go out and get something to drink for myself. As I close the frig door I hear gilbert sneeze really really loud! he never sneezes no alergies he did this 4 x ........I know my baby woke up from that so I head down the hall. he is pushing passed me to get to the toilet and violently throws up goes lays down gets back up and throws up more ......and more and more......I thought perhaps he ate something bad we get free food out dated from the churches. so I just let him sleep it off and ask my quad patient whom we lived with until our new apt was ready, if gilbert ate or drank anything since going to bed at 9pm the prior night. he replies no he got a drink an hr after u went to bed but thats it. You can't do anything here and my quad not see you he is in front of the door and next to the kitchen.

 

Well I figured out that this was not food poisen and began calling friends for a ride as we don't have a car. The friend I got to take him had no room in the vehicle for me and the baby too so I got in touch with another ride later after he was admitted and give or take a few hrs thinking they had that time to test him for a stroke or diabeties related ailments. I gave 20$ to my buddy told him to take gilbert to el camino hospital which was 22min away from where we were. he takes him to another hospital which if he had gone maybe 4 exists up on the same freeway he could have taken him where I specifically told him to! I don't like the hosp where he is at. gilbert had to be carried in he looked and acted drunk one min you could understand what he said but not the content why it was said. I talked to the er dr when they got him telling him he had no drugs or alcohol that day for sure I was positive he never left my sight. please check him for a stroke. They said they would......instead they ask gilbert who says its feb and its aug....if he did any drugs meth coke alcohol.........he repeats the dr and slurs yes he did them. they basically put him in a room turn off the lights and let him sleep thinking he was just coming down off drugs!

I get there around 3am they say he's just over dosed or withdrawing and as soon as he wakes up for me to take him home! I'm furious but ask calmly if i can get a 3 day observation or i'm not claiming him explaining that i have a quad patient a 3 month old baby I can't take care of him like this .........this is not normal please test him for a stroke. they agreed but didn't give it to him until 6am which was pretty much 24 hrs since original symptoms. called me up and i came down to view the ct scan where is showed quite clearly alot of blood on the right side middle area. they monitor him for 2days past this so it was the 4th night when i went in on a scheduled wake up time (they gave him narcotics restrained him but woke him every two hrs) the nurse says the nurosurgen has been called gilbert was unresponsive. I tried for an hr while waiting for the dr. nothing........dr says we gotta drill a hole place a drain tube to releave pressure I let him know my job and ask as a learning experience could I please watch out of the way? he agreed and I only turned white at the end part then got some juice. if there were complications i couldn't hear about it 3rd hand and if he was to die i didn't want him in a room full of strangers. they kept him sedated for3 weeks intubated feed tube too.

 

I had red cross inform his 22 yr son in the navy i began on the 2-3rd day going through every ph of gilberts I could find to inform family most I never met or talked to before. I gave his adult children the right to make his decisions for him i've been in his life little under 3 yrs they are blood its only the right thing to do. gilberts off sedation now has trach catheder and feed tube in stomach he opens his eyes moves his left arm but is not seeming to be responsive to commands. they say the drain tube had bacteria growing in it and his right side of his face and brain are infected.....not sure if the tube created the bacteria or the fluid in his head was infected already. the family including his ex wife have been really nice to me and our daughter I have now met her and their two younger children 20 and 18. and an aunt on his mothers side mom is dead i thought her sibblings were too.

 

they have those dummy books on everything else .......i've not seen my patients before they got like how they are have never seen the recovery part but this looks bad really bad and I love this guy soooo much I just don't know what to do how to help him the best and now our childs 4 months old I wish she could know how much he treasured and loved her!! he was such a good daddy the 2nd time around!

any thoughts?

 

i am 32 on sat. he will be 43 next month

[lisas]

:welcome: Megalina,

First, let me start by saying that I'm truly sorry about your fiance. Please be assured that you did everything possible to get him the medical care he needed. It's not your fault that it wasn't caught in the beginning.

 

I went through the same thing with my daughter Rachel. She is 22 and had a massive stroke on 2/17/06. It was also caused by a bloodclot. She first went to our local hospital down the road. They did a cat scan and no stroke was present, but she couldn't move her right side. They transferred her to another hospital 30 minutes away. They suspected a stroke but no signs on cat-scan.

 

The stroke showed up about 24 hours later on repeat brain scan. 2/3 of the left side of brain was affected. We were told Rachel woudn't make it. We were devastated, but we prayed 24/7 and kept the faith. I'm happy to say though that she is still with us. Never give up hope. Miracles happen everyday. :big_grin:

 

I felt guilty at first about not getting her to the right hospital, but we do the best we can with the information we are given. Hang in there. I'm praying for you. :hug:

[jriva]

 

 

Hi Megalina and welcome,

 

I'm sure you were only kidding about a Hemorrhages for Dummies book, but they actually do have one titled Stroke for Dummies. It's gotten pretty good reviews, too.

 

Almost everyone on this site---caregivers and survivors alike---has gone over "THE DAY" and in hindsight have found things they wish they had done differently. Many of us have also had major delays in getting testing and a diagnosis. When my husband was in ER his slurred speech and his dragging his right foot coupled with the fact that he had taken a muscle relaxer earlier in the day made the ER people write off his symptoms as an over-dose. No MRI was done until the next morning, even though he got to ER in the late afternoon the day before. It took a while for me to come to terms with the fact that had they done the MRI when he first got to the hospital, it wouldn't have made any difference in the out come; the stroke had already happened and it was a matter of waiting to see how wide spread the damage would be. So try not to beat yourself up over the delay in getting tests done and everything else that could have been done differently that day. You energies and time can be better spent focused on what you need to do to help him now and in the future. Just remember what Lisa up above said: in times like the day of a stroke, we all did the best we could with the information available to us.

 

I'm glad your boyfriend's family is treating you well. You all need each other now. Stroke recovery is a long road. This is a good website for support. Stick around and do some reading, especially in the caregiver forums to start out.

 

Jean

[arogers]

Megalina,

 

What an interesting post. My husband's 2nd stroke was a bleed. I've asked the same questions as you. If he had gone to a different hospital? If the doctor had not told us he was an "uncooperative patient" who may as well go home and come back tomorrow if he still had a headache...Of course he did, and it was about 24 hours post the onset of his symptoms that they did a CT scan and found the blood - and another 14 hours before they told me that his brain was swelling and he was being transferred to ICU.

 

I have had horrible resentments since that day toward the doctor who sent us home. Bill is in the hospital right now and the doctor who made those observations was his hospitalist today. I had never wanted him to care for Bill again. It must have been in God's plan that he came in today and I was able to calmly confront him. He was on his way out the door when I told him we had seen him before, and the circumstances. The man turned pale and came back in the room and sat down. He then went to the computer to see if his name was anyplace on the file that he had cared for him. It was not. He, of course, told me he never would have done that - and if he could find anyplace where he made any comments of that nature he would certainly apologize. I'm so thankful I stayed calm, and we had an opportunity to discuss that night. I have a totally different opinion of him now. He is a kind, thoughtful and dedicated physician. He told us he is at our beckon call for anything we might need. Period.

 

We also had a chance to discuss the stroke, and the impact of Bill leaving that hospital that night. His explanation was the same as other doctors have told us. And a lawyer, by the way. It seems a bleed is much more difficult to observe on a CT scan initially. And since the symptoms do mimic other problems - alcohol overdose, drug overdose....it often takes 24 hours or so for an MRI to be ordered - and at that time the situation is apparent on the MRI. He did tell me that unlike a clot, there is not medication to be given to help reduce the stroke.

 

Bill's brain swelled and he was in ICU about 6 days before he started to "come back". He didn't have any surgery, they did however use medication to help reduce the swelling. He remembered nothing of the experience - as the doctor predicted. By the way - we initially went to the hospital thinking it was his diabetes. We also went to the "wrong hospital" - and if we'd known it was a stroke would have gone to the hospital he is now in.

 

Bill did go on to suffer another stroke 5 months later - this time a clot. Of course, I wish I'd taken him to the hospital earlier in the evening - he had the hiccups for hours and hours.....and we were at a meeting when they started. He didn't feel well, but instead of using my own intuition we went home as he wished and went to bed. Regrets don't change the outcome - and life is what it is.

 

I know this was long, and probably rambling. Yes, I wish there was a stroke book for dummies - but, this site is much better I think since we have an opportunity to share with each other in a way no book could allow. Please feel free to e-mail me, or PM me anytime.

 

I'm so sorry you are going through this - it isn't easy, and I'm sure it's even more difficult with a baby. Welcome, though, to the best site on the web for support and information!!

 

Warmly,

[Robyn]

Welcome Megalina...my partner stroked not long before your fiance...July 20th. The emergency room MD discharged her from the hospital with a 172/117 BP and confusion and difficulties speaking. I am FURIOUS with the hospital but as Ann said, Jane's bleeder probably wouldn't have shown up with a CT and even if they had there is NOTHING they could've done to stop it...it was destined to happen as it happened under the circumstances. She was left with mild right side paralysis and aphasia/apraxia/Short term memory loss. Most of that was coming back shortly thereafter but still. There are emotional issues she is dealing with now...is pushing me back to just focus on her healing and it is hard to deal with. Being 1000+ miles apart right now doesn't help at all. Her family, in Boston are caring for her due to legal issues and also because I just started a new job and have two young kids...they felt they could get her the best care there, which they can. Things have changed radically for us overnight and it has been overwhelming to me but in 3 weeks I've come a long way understanding strokes and their impact on her and our life together. That is because the people here are amazing and knowledgable and are willing to share all they know about strokes and caregiving. I'd be lost without their knowledge and support...they have been my lifeline for the last few weeks!

 

I'm sorry this has happened...recovery doesn't happen overnight but I'm glad things are going well with his family. Be patient with yourself, with him, and with his family! Trust me...there is lots ot learn and you will be OK...I promise!

 

:hug: Robyn

 

 

[bstockman]

Hi Megalina, don't beat yourself up because you think you may have missed some signs.... I was a medical assistant.. I had small signs for 10 days or so before the actual stroke hit me.. I missed them, they were signals and symptoms ..of sinus, or allergies. Symptoms that i had in the past and gone to the Dr for. When I woke up the mornig the actual stroke was taking place, I has suspicion of stroke.. went to the Dr and he at first thought it was a sinus inf or vertigo. then decided to have an MRI done.

 

As you will read many have gone to hospitas and were sent home.

It is hard enough for a Dr. to diagnose at times.

 

I am glad you are being treated well by the family.

 

You have found a great support site.. Recovery can be amazing.. other's have come thru that were not supposed to make it,

 

Take your time and read the postings, Recovery can be LONG and Slow, it will take a lot of work for you both.

 

Best wishes, and warm thoughts to you all

[chrisratty]

Yes, Megalina, don't blame yourself for aanything that's happened , you did all the right things to aid your partners recovery. I'm an ex nurse & a Social Worker & yet I wasn't prepared for my husbands stroke 10mths ago. Just hang in there & although progress will be slow he'll get there in the end. Carry on coming on here I've found fantastic support from everyone on here.

 

chris xx

[fking]

Meg,

 

I welcome you as a loving caregiver to your surviving fiance. I too, had a bleed, passed out, got to the hospital about 5 hours later. Didn't need the operation, the bleed had stopped by then.

 

My wife and I are about the same distance in age as the two of you are, but about 20 years older.

 

Again, welcome and talk to us often, but if you can, break it down into smaller paragraphs, about 6 lines or so. Some of us have problems trying to read the long post with no breaks.

 

I haven't read all of your introduction yet, but I will. Thanks so much Meg!! I Hope you don't mind me calling you Meg, it's easier for me.

[caringfor5]

Megalina,

 

You shouldn't beat yourself up over things that happened the day of the stroke, but I understand where you're coming from because I had those same feelings quite often myself. I think a few of my ealier posts I spoke about this same thing. I think everyone does it, its the old "what ifs". They will tear you up some days.

 

My fiance had just turned 35 when he had multiple strokes that were caused by a blood condition called anti phospholipid antibody syndrome....complicated name but basically it makes the blood thick and can cause many health problems. When we started dating he told me that he took blood thinners because he had recently gotten a blood clot in his leg. He never told me that he was suppose to take the blood thinners for the rest of his life, either he didn't think he needed to or he ignored what the doctors told him, I don't know, but by the time we moved in together he wasn't taking them anymore.

 

Fast forward to September 2005. or actually a few months before that. He developed a sore on his leg, we didn't know what caused it and it wouldn't heal. He had no medical insurance but he still went to one doctor for this and to the emergency room 4 times because of the pain this was causing.....no one realized that it was the blood condition causing the sore on his leg. The hospital would put him on blood pressure medicine, antibiotics and skin creams, it still wouldn't go away.

 

Early September, he develops a really bad cough, complains of headache, and a few days before the 10th he is showing signs of stroke or TIA's but neither one of us recognize these little signs, things like poor hand eye coordination and forgetting where things are. On the 10th he finally agrees to go to the hospital, keep in mind this is the fifth time he has been to the hospital in 5 months and he just keeps getting worse. At this point we don't know whats wrong with him. He is admitted that day to ICU for pneomonia and kidney failure, not stroke. The ER doctor questions me about drugs, i say no, that he never does drugs....i ask him about the strange symptoms, the doctor says he's just lethargic that he's dehydrated and hasn't had any sleep (we had told him that he hadn't been able to sleep and wasn't eating or drinking very much).

 

They get him settled into a room, one of his eyes is not shutting all the way, one of the doctors asks me does he sleep like that all the time, I say no, they don't seem to be alarmed at all. None of the doctors or nurses were acting alarmed, since I'm not a doctor I wasn't alarmed either. I thought they would put him on a strong IV antibiotic, rehydrate him and we'd be home in a few days.......by that night he had had a heart attack, and later it was found that the clots on the heart that caused the heart attack were "showering" all through his blood stream and caused mutlitple strokes.

 

It seemed like the first few months after the strokes I would constantly think of new things that I or we could have done differently or if they would have happened in a different way then everything would be different. I couldn't even begin to list all the things that I wish were different about those last few months before his strokes or all the things that I wish I knew then that I know now.

 

The bottom line is we didn't know and even when he went to the hospital, the doctors, people who are trained to know these things, didn't know what was going on with him either. I think I have finally gotten to a point were I don't beat myself up on a regular basis about what happened. I can't change everthing now, all I can do is go forward. I hope that in time you can come to terms with this yourself. I know its not easy but you shouldn't blame yourself, it won't help anyone if you do that. Be strong and you will get through this.

 

Tina

[megalina]

[attachmentid=200][attachmentid=198][attachmentid=199] Thank you all for your support I really am greatfull for it! Yes you can call me meg lol I don't mind. I was kidding trying to throw some humor into this about the book hemorages for dummy's. Interestingly enough they do have strokes for dummy's I'll have to check it out. I also heard where is the mango princess is another good book to read about a lady whose husband had a stroke.

 

 

I'm not really beating myself up over that day ..........but venting honestly my feelings helps clear the noggin better then stuffing the feeling. Actually I've held my self together for the most part.......its when I get those asking "how are you doing or are you ok?" I can't look anyone in the eye and lie so a flood of tears comeout......and i say oh i'm cool just left the faucet on excuse me!

 

No one knows whats going to happen to him from this point on. I do know however that the earlier you show signs of either comunication or understanding language the better your chances are for being rehabilitated in therapy. He is nonresponsive and shows no recognition that I've seen. Well I am not sure if he recognized the pictures I held up for him or not he did have both eyes open for a little while I only had 3 pics at the time I plan on including more but waiting on others to hand over what I asked for.

 

He does have an infection on the right side too along with swelling........nurse said bacteria was found growing in the drain tube draining the fluid out of his head. Now I don't know if the bacteria grew from the stuff already flowing out or if it caused the infection with in. no one seems able to answer me straight about it either. Hopefully the antibotics work and the infection goes away as does the swelling and maybe then he will show more signs of being coherent.

 

thank you all for the support

megalina

 

i'm going to try to add a pic but not sure if it will go through

[lisas]

Hi Megalina, :friends:

 

The pictures you posted are great. Your baby is beautiful. I will pray for you to have some peace. Keep the faith going. Maybe is they get a handle on the infection, there may be improvement. :hug:

[bstockman]

hi Meg, Great to hear back from you. As you may have read other survivors here were in comas for quite awhile. My stroke was not that severe. I never was unconscious.

 

Love the photos, thanks for sharing.

 

Hoping the best for you all.

[fking]

Meg,

 

We are glad to be here and able to support you during these trying times. We are deep into what you just started. We strive to console each other with our experiences and I really feel it does help in many ways coming from others that knows.

 

He and I are survivors, we need all you caregivers, together we can make it happen. Again, log in often and read the news and a laugh or two to keep your spirits up and running.

 

We are all on medications for life, so lets live a little, one day we all got to leave here. Recovering never ends, it's just a tad slow but we are a-l-i-v-e and glad of it. :happydance:

[chrisratty]

Meg, what lovely piccies......don't give up regarding his unresponsivness, people have been in a coma for a long time & come out of it OK. Just keep talking to him, playing him musice you both like...even take the baby in to see him, all that helps as it is a known fact that when a person is seemingly unresponsive..they can still hear people around them.

 

Sending hugs xx

 

chris xx

[Robyn]

Don't give up Meg! And let the tears flow as needed...it is what you need to feel right now. They help you process when the emotions are just too much.

 

The pictures are beautiful...!!!

[megalina]

[attachmentid=201]

thanx for all the compliments on my pic's lol I love showing off this critter! actually I need your guys help with something.......my sister in law took this pic and I can't seem to come up with a caption for it can any of you?

 

gilbert is not in a coma .......that I could handle better. He also isn't taking any sedation meds the only thing they got going through him is the standard iv with extra glucoss for diabetics and feeding tube in stomache plus the antibotics for the infection on the right side. no it seems that his unresponsivness is due to the extent of the brain damage. At least thats what the dr's and nurses are telling us.

 

I can't bring the baby in.......I used to in the begginning but I was coming in at night with her asleep usually. he has an infection for one thing and most the nurses wont allow her into msicu.........maybe when he gets a regular room they might but not now. I'm going to try to buy a recorder to record her laughing and cooing she likes the sound of her voice and will talk to me for a long time its rather funny actually.

I don't think she knows that I have no idea what she's telling me........evidently she thinks i speak her garbble lol.

 

thanx for the support .............oh did you think of a caption for that pic?

[fking]

Meg,

 

I thought of three in fact, check your PM's!! That way I don't alter anyone's idea(s). :pepper:

[jwatrous]

Please don't second guess yourself, as I'm sure you did the best you could do at that time, and with all your experience, you should have no trouble in getting your finance well soon. but try not to push her, as you do love her and may expect her to give you more than she can -

YOU ARE NOT A DUMMY

June :2cents:

[megalina]

 

 

oh i know i'm not a dummy .........but i'm not sure how i can help him the best since going through this has not been in my experience .......just the gone through and already home part. my patients all had their conditions for a long time or at least over a year. I know some therapy to help him but he has to be awake and coherent long enough which at this time he is not.

 

thanx for the support

[bstockman]

I put the captions for the photo under your other post, so will continue with this thread.

 

Right now all you can do is shoe your love and support. When you can be at the hospital with Gilbert talk to him, say the sweet little things you say to each other. try to not allow anyone talknegative about his condition in the room where he can hear. Just reassure him that you are there and this is just a challenge to overcome.

 

Touch his hand or rub his arm. whatever feels natural and comfortable. He may not respond, but he may be aware and hear more than you realize.

 

Hang in there, Bonnie

[megalina]

thank you bonnie

 

i know to do those things with him but when i get in the room, i like clam up ......i love rolls off the tongue easy ......i'm doing good doesnt and neither does your doing good. i try to tell him that i want him to fight and come back to me and his baby girl. i tell him she misses him ........

 

now what...........go over the day the week the year we had? tell him what a cute gown he's wearing and that i feel bad for him being a pin cushion........but the sooner he fights this the faster we get on up and outta here?????????

 

I miss him teribly no i dont cry in the room .......i almost don't feel anything my emotions are exhausted!

[chrisratty]

Yes Meg I feel like that sometime...what can you say to your guy & my hubby is as ok as you can get after having a stroke, but is still away from me...we tend to talk about trival things...but I do share my day to day life with him & show him photo's of family & pets...you tried that?

 

chris xx

[Robyn]

I found with Jane, it was important to keep things very simple. Not to talk about the future as much as the present. But she was pretty cognitively aware. If she was out of it, I would've just gone over my day, read to her, talked about the love and support coming her way from people, read cards to her, etc. Sometimes just hearing a voice is what is needed!

[megalina]

 

 

i have brought pictures enlarged too so he could see them better of our daughter and of me and him holding my son at thanx giving......basically the pictures i put here lol

 

i'm waiting on family and friends to givve me theirs .........

 

i'm going to try and see him hopefully today

 

meg