Looking for advice on how to help my boyfriend who just had an aneurysm

[dragonfly_7]

Hello,

Looking for advice, my boyfriend suffered a ruptured aneurysm (3mm) and then a blood clot after the coiling, 3.5 weeks ago. His swelling had gotten so bad that they placed him into coma for a week and it took him a week to come out of it. Just wondering what I and his family can do to help him recover. He is still in the ICU, has not spoken (has a trachea in), responds to voice command sometimes, seems to be able to track with his eyes, his focus comes in and out. He is only 28 years old. Thought maybe survivors and family members would have some input and advice we could use to best support him and maybe where to get information on what to expect. Thank you for any help you can provide.

[TropicalTrish]

Hi Dragonfly,

You came to the right site -lots of folks on here will be able to tell you their experiences and where to get the right information.

I was only coiled - so no help from me - but you sure have my sympathies and I am sure YOU must be going thru just a terrible emotional time right now.

I know when I was knocked out in ICU my guys voice really did comfort me so I would personally do a lot of talking to your boyfriend whether you think he can hear you or not.

I would keep telling him he was fine - he was loved -and give him all your day to day news so he has something to dwell on when he is conscious.

I know if it was me - I would want people talking to me not at me or around me.

I vaguely remember Nurses and Dr's talking over me as if I wasn't there and I wanted to wake up and give them hell for that.

Anyhow - stay strong for him and also for yourself and pray for the best outcome and I know you will get lots of good info from the Angels on here.

Take care of yourself as well!

In my thoughts and blessings

Tropical Trish.

[Kitty]

I agree with Trish, do talk to him, even if he doesn't seem to be responding. Bring in some pictures of people he knows, put bright things around the room, things that will catch his eye and things he is familiar with. I know space is limited, but do the best you can. Paste up all his get well cards on the mirror.

Play music for him (but not too loud, loud noise can cause anxiety after a brain problem), read to him, watch things on TV with him that he would like.

Touch him, hold his hand, but again watch not to overstimulate him.

Be patient, it takes time to recover. I had a rupture, but not the clot problem, and was in neuro ICU for 16 days.

And take care of yourselves, most important!! It's easy to get so caught up in the worry and stress that you don't sleep and eat right. You need to stay strong, too.

He will be in my prayers.

Kitty

[JulieNH]

Welcome Dragonfly,

I'm sorry you and your boyfriend and his family are going through all this. I, too had a rupture, was coiled, and had a clot/stroke during the coiling. I was 46 however, not 28. I have a feeling that his rupture was in a different location than mine, and it affected a different part of his brain.

Kitty and Trishare right about touching and talking, and over stimulation. I was in ICU over the 4th of July and I could see the fireworks from my ICU bed, and even fireworks overwhelmed me. Noise, colors, and flashing light were too much. To this day, a strobe light will send me over the edge.

I spent over 3-4 weeks in ICU, I was never in a coma, however, and then I came home. It was so nice to sleep in my own bed without being awakened every 4 hours to check my blood pressure or reflexes. I refused to go to rehab. I just wanted to be home. My family was wonderful and patient. I went to out-patient rehab (occupational, speech and physical therapy) a couple times a week, but the best healer was time. I would not start therapy right away if I had to do it over. My brain needed more rest. Sleep is key to recovery. Before he's discharged have the hospital recommend a neurologist for his recovery. Ask that he is not put on a barbiturate as a pain medication, but he will need a pain medication. Headaches are par for the course after ruptures. I had to train my brain not to hurt, and that took medication. But sleep, rest and time were most important for my recovery.

I was not really myself for a year, and I still have moments when I overdo it and I have to rest and regroup.

Please let us know how he's doing periodically. And as already said, take care of yourself! My mother got a nasty staff infection in the hospital with me. Her resistance was lowered from the stress of taking care of me. Just know there IS hope!
JulieNH

[Travelingdueo]

Hi Dragonfly
My husband suffered a rupture but had his clipped, he was in a coma for 4 weeks, was on the vent for most of the time then got the treach,
Next month will be 3 years!
I did talk to him, read the cards to him, played the TV and the radio as he was always a music listener.
I gave him massages, especially his feet, until he got blood clots in both legs and couldn't rub anymore, but did his arms and hands and his back.

When they finally let him wake up more he did a lot of eye following, he didn't talk too much even after they took the treah out 2 1/2 months later.
Ray ended in rehab for 4 weeks .. he had to learn how to dress himself, stand, and walk and eat.
Its been a long road but I still see new progress today.
When he was in the ICU he didn't use his right side.. so got him one of those stress balls to squeeze, but had only when I was around as once he tried to bite a nerf ball as he thought it was an orange.
I even used bubble wrap to pop them. he always loved doing that and it took a lot of strength to just pop so that was a therapy for him..
When he was released home I had to really work with him, doing puzzles, kids game cards for matching, finally was able to play yatzee.
naming the pictures he had a hard time telling me what it was but yet he could read so if it had the word written he could tell me what it is.
He today has some problems with name idenification on things.
He has short term memory loss , no new information is retained. He had some long term loss but that's a hit and miss.
At times he would forget who I was, tell me I was just a really really good friend.
There were times that he was looking for Becky and I say I'm Becky , look at me. and he would say no the other Becky.. I never really found out who that was..
I think maybe he thought one was a "caregiver" and the other wife.

Hope that your boyfriend will recover faster, but no one knows how long it takes to recover,, just keep working with him and don't give up on him and he may pull out.. sometimes we all want things to hurry up and be back to normal or the way it was...

Another thing I made up a small hand size photo album with the names of the important people and places in his life..

The hardest was that there was no family or friends around. to help with the healing and visiting with him..
We only had his sister and her husband who offered their home for 3 months until I felt comfortable to be on our own. which took 4 months from the time he came home.

When he came home from the rehab he didn't stand, really hold him self up sitting for long if not sides on a chair. couldn't walk. and finger ate..
By 2 months he was walking with a cane! and eating with forks
3 years later he can walk with out the cane but uses it as his stability is shakey at times, he can stay home as long as I have walkie talkies on us for 6 hours or more.
He just likes to eat and don't realized he already ate.

It's important to rest for yourself.. everyone told me but it was really hard to take their advice, and I was getting run down once he got home.. when I had to help him transfer from the chair to a bed as he couldn't do it on his own.

This is just what we went thru .. your boy friend may not even have such a hard time when he wakes up,, he is alot younger too.
But to hear what others gone thru might help to understand what we did.

Good luck and keep us updated

[Cajsa]

Hello Dragonfly 7 -

Sorry you have to go through all this with your boyfriend.

When I was recuperating from my clipping surgery (ruptured aneurysm), my husband and stepson were always there talking to me. If I asked "am I going to be all right", my husband would say "not only are you going to be all right, you're going to be great!". I think just expressing the belief that things will turn out OK will be very helpful, sort of like contagious positive thinking.
If he feels you are there for him by talking in positive terms and holding his hand, I think it will be tremendously helpful.

All the best to you and your boyfriend!

Cajsa

[EMPiff]

My b-friend's mom had a SAH burst the night before Thanksgiving and a rebleed that night. Since then, she had coiling done and she has lived despite some rough vasospams. She was in a coma for about two weeks but has woken up since. She's still in the hospital 33 days later. Like Dragonfly's boyfriend she responds to voice commands sometimes and seems to be able to track with her eyes sometimes but we have no idea what her cognitive functioning level is.

However, my reason for posting is because she's on a trach and we cannot communicate with her because of it.

I think she is desperately trying to talk to us, but I have to figure out how to give her the ability to do so. I thought of a book or poster of some sort that would allow her to point to certain things associated with simple pictures.

For example, "I'm in pain" would include the Baker-Wong Faces (there are 5 of them and it is used as a scale to help children identify the level of pain they're feeling so it's simple) and maybe simple drawings of a body so she could point to where it hurts as well. (She doesn't have full use of her arms/hands so she couldn't necessarily just reach to show us.)

I've never been in the hospital though and unable to speak. What else would you have wanted to tell your family & friends?

She can't eat or drink on the trach and she can't get out of the bed so that takes out a bunch of possibilities. But some others I thought of were: Please talk more softly? Please talk louder? Please stop talking altogther? Take the air things off my legs? Moisten my mouth with a wet paper towel? I love you with family members names nearby? I'm cold/hot?

Are any of these good? What else would you have wanted to tell your nurses or doctors?

Do you that have been through this think that she could possibly comprehend it? Do you have suggestions for format? Should it all be on one side or would that confuse more so a book would be better? Should it be black and white or did color help you at all? Etc.?

Also, very touchy subject....she didn't have a living will but has to be constantly restrained unless someone is watching her closely because she keeps trying to pull out the feeding tube and trach tubes. We don't know if she knows what she's doing or not or if she can understand the consequences of it...Do we put in any messages for her to state those sorts of wishes?

Thanks so much in advance!

[cindybear]

when I had my stent placed in 2005 , I had a clot..my whole right side weht paralysed and I could not speak at all. when I tried it sounded like garble..They gave me some clot busters and it helped clear most the clot,,But I have had some problems from it...but my recovery was long (it seemed to me ) about 8 months...All I wanted to do the first 3 months was sleep..I felt so very tired all the time..But I think it helped me alot in my healing,,I did get up everyday and move around..but I mostly wanted to be left alone and sleep..I still have my aneurysm..They was unable to put coils in after the stent placement..And now they say it is just way to dangerous to even try..Thinking I would stroke out again and the outcome would not be good next time..I barely made it through that horrible surgery...But I am glad I had a chance to try to get it fixed, Living with this monster (with severe pain ) since Jan 3 2001..Will soon be 8 years..I still get monitored every Jan, to make sure the stent is patent..And to check on the aeurysm..Just remember time and rest will be his best friends after he comes home...Please do not think he will be in great shape in 6 weeks,,the brain does not work like that..It does take alot of time to heal..He has been through alot..But it sounds like he is doing pretty good, considering everything he has been through..Some people I have talked to say that it has took them up to 2 years asfter a rupture to feel half way descent..When he does get to feeling better..TRy not to let him over do it to fast..sometimes that will put them back, specially when the brain is screaming for more rest,,Hugs, Cindy