I am so incredibly scared.
My husband has been moved to a 'select hospital' inside the hospital where he has been in ICU for nearly 3 weeks.
I know this is a good thing, He will start to receive therapy and rehab. All the things I have been wanting.
But I have have become comfortable with our nurses in ICU, our 'cheerleaders". And tonight, I had to leave him with all these new people I don't know. And on top of that, I don't know if he understands. I hate leaving him alone.
He does respond to commands at times, I see him focus fully on me at times. I feel he is fully there. But isn't able to fully show us.
He is my great love. And I hope I am making all the right decisions.
Danijo, it sounds like your husband is headed in the right direction. Hang in there. Within just a few weeks, you may be feeling loads better than you do now. Your husband is very fortunate to have you. We are rooting for you both.
You are doing an admirable job and your husband is blessed to have you as his advocate. Try and stay present and hold on to your faith. Each day will bring small steps forward. This is all temporary and, Lord willing, you will look back on this time with renewed confidence in your strength and conviction. God bless–
That is great news! I can totally understand your fears. Breathe! Things are getting better. Please, don't forget to take care of yourself. As your husband moves away from critical care towards rehab, he will need you more and more. Get rest while you can. Start letting all of those people who have offered help in the door. It is a long road and you will need support so that you can be there for your husband.
Having only been on the receiving end of AVM treatment I can only add that my family was as scared as are you Danijo. And if it's of any comfort know that your husband is in good hands when you're present and when you're not. For whatever it's worth and what worked for my family was this: I told them before surgery, that when I'm in Neuro-ICU and unconscious be sure and take some time for themselves; away from all the beeping monitors, doctors being paged over the speakers, other patients and their families, etc. Otherwise they would go crazy. Even if it's just a short period you must take time for yourself. It's healthy and allows you to process everything a bit easier. I've never married and no children. So, was a different experience. But my parents and sister were there told me it was hard to leave me but realized my caretakers were there and were really a lot like family. So it made it a bit less stressful for them. Hope this helps.
I would like to add, and I hope many of my AVM brethren out there read this, that my nurses and doctors were amazing. They made such an unbearable experience bearable. Once I was able to get around, after about a month, I found the biggest box of Godiva Chocolates and dropped it off to the nurses station. I'm not a very emotional person. But I was teary eyed when I gave the chocolates to them. Though this site is for us AVM survivors I want to praise the skills and compassion of these wonderful people who quite literally take our lives in their hands and care for us during such frightening and often desperate circumstances. Thanks to these angels who care for all of you or your loved one experiencing this long journey.
Hi Danijo - I know this time must seem scary to you, but you are in your husband's corner and obviously advocating for his best medical interest. Sounds like he is making progress since he is now going to rehab. Sometimes recovery is slower than we would like, but keep hanging in there. I know your hubby is feeling your love :).
Danijo I too have been where your husband is now.About seven years ago I suffered a major brain bleed/hemorrhage,couldn't speak and had total paralysis of my right side.I spent the next three months in the same hospital in their Rehab unit.As has been said you have already undergone the worst and now begins the come back.It will be a long road with sometimes big improvements and sometimes small but each one will bring joy and cause for celebration.In my case I regained all my speech,about 70-80% usage of my paralyzed arm and hand and became ambidextrous through learning to use my non dominant hand-something I never thought would happen.Unfortunately the right leg never came back to where I could walk again but I thank God for what I did get back.
The people who are caring for your husband really know their business and will work with him in many areas.In time they will teach you too what you need to know when he doe come home.Trust that he is in god hand and get to know them.I've found that the people who do this work are a special breed and wonderful people.
Be there for him but take care of yourself too and have faith things will get better-much better as time goes on.And again as has already been said he is very fortunate to have you-just knowing you are there and handling it all will bring great comfort to him.
I will include you both in my prayers.
Stay strong and may God Bless.
Hi Danijo, I’ve been exactly where you are. As the loving partner, watching your loved one go through critical illness and intensive care is terrifying and the thing that makes it bearable is the hospital staff who care for them - ‘cheerleaders’ is right!
When my husband suffered a brain bleed I put his life in their hands; it was a comfort. When he moved from ICU to HDU the level of care was less ‘intensive’ (of course) but it took a long time to accept that this was because he no longer required that level of support. He was getting better!
Like you I was nervous about the new staff who would be caring for him. There’s a fine balance to be struck between letting them do their job and being visible as his partner to query something or answer their questions. For me I made sure I introduced myself to each staff member who would be looking after Alan; telling them a little about his quirks, personality and needs. It made us all feel at ease with one another. Alan made a full recovery, at his pace, with the right level of care in place to support him at every stage.
Recovery is slow but it needs to be. Take each day as it comes. Have no expectations and just take the journey to better health steady - you’re recovery is also part of it.
My love, thoughts and healthy wishes go out to you.
All the best with the road to recovery. Have faith and trust in the support staff. I was given the cure in Jan 2008 and still think about the nurses often. I have had no deficits thankfully so anything is possible with your husband. take care.
Hi, Danijo - I saw dancermom share this post first thing this am and I just had to respond. I was in the ICU for about a month 3 years ago, was "downgraded" to ACU for 3-ish days, then transferred to a specialty LTAC, and then "Therapy Boot Camp." I was semi-responsive to commands in the ICU but I started really waking up when I moved to ACU and the LTAC, and fully woke up at the 3rd Hospital (Therapy Boot Camp). I was scared when I started waking up bc I did not understand what was happening. My parents waited by my bed for over a month for me to wake up for real. Although I do not recall what my mother said she has told me stories of how when she did say stuff to me I listened and acted accordingly (like for a while I was thrashing around and kicking wildly and hurting myself. So she caught my legs and told me to stop bc if I was making so much noise there was now way I could hear what God was trying to say to me. I stopped kicking the next day.) So definitely talk to your husband, give him the recap of what has happened, assure him that everyone around is going to help him. The nurses also recommended bringing in familiar pictures, etc. so my siblings collected pictures from my fridge in my apartment, copied them at Target and made a beautiful picture board that came to all 3 hospitals. My parents did not stay with me at night (it was 3 months and they needed to be functional during the day) but before leaving Mommy would visit the nurse's station and extract a promise of motherly attentiveness throughout the night from my nurse(s). She would come tell me the name of who was going to help me. I clung to the familiar people and tried to repeat a list of their names to myself at night so I could write thank you cards later. But I forgot as soon as I moved to the next hospital. But the people there were so great I learned to love and trust them, too. I think the big thing to diffuse the fear is to make your presence known in the ward. Recruit friends to come visit, fill his room with flowers, pics, whatever's allowed. The message is that you and lots of other people are monitoring his care, and you expect it to be top notch. I just took my first trip back to OR (where I used to live, and where I got sick), and my doctors/nurses told me that I had the best decorated room EVER, and there was a constant stream of people in and out. It was a great joy to see them again - the very early ones in the ICU I did not recall, but I got to see some wonderful people who helped me and who I'll never forget. At that early stage I clung to the familiar and I fully remember the uncertainty attached to moving to a new place. But when the new people turned out to be fantastic, too, and I had the safeguards/vigilance provided by my family/friends to help ensure that they all knew they had to bring their A-game, I felt better.
Also, you're right that it's a good thing they're moving him to the next "phase." Everyone was horrified when they talked about moving me. But I really needed the kind of care and rehab the other places were specialized for.
Take heart today :) ann ning learning how
Hi Danijo. Good for you for posting a blog here and I hope the wonderful comments have been some comfort. I feel deeply for you and hope you are doing better today. I believe Scott will find your love very healing. Please know that you all continue to be in my prayers. I will watch for your posts.
Good Afternoon. Day 3 in the new room.
Yesterday I was heartbroken. I didn't know anyone, I didn't feel anyone was caring for my Scott on a level that he needed. So I just kept doing what I feel he needs. I have been doing range of motion, playing his music and reading to him.
During one of the times when I was reading to him, he lifted his left hand up off the bed. This is HUGE. I haven't seen him move like that in weeks.
I left with a heavy heart, but made my presense known with the doctors and nurses before I left. Just telling them to take care of my husband.
Today I came in and he was in a Cardiac chair getting range of motion therapy. I was so glad to see this happen. And he was so incredibly aware. Even trying to mouth some words to me.
The whole day until now has been like that. He has moved both lower arms, followed simple commands, took some vernors (gingerale) from a sponge and really enjoyed it and put his lips together for a kiss.
Also, the ICU nurses came to visit us today. And that made my heart feel good.
Such a long road ahead of us and I know this. But today gave me more hope.
I have so many questions for all of you, I just don't know where to begin.
What is, in your opinion, the best therapy for a 'semi-conscience' state? What should the facilities that I am looking at have? What questions should I ask?
I am so grateful for this site already.
Danijo, you may wish to put the new questions in a new discussion, to make them more visible to our members.
Twenty five years ago, my wife was in the same spot you are in. Except they put me in a coma for a week after the surgery and she was five months pregnant. Each time they moved me from ICU and then to another hospital, she would meet all the doctors and nurses. She was so busy taking care of me that she didn’t notice the pregnancy. That’s the good news. The bad news came when she got pregnant a couple of years later and I didn’t provide a distraction.
While it’s been difficult in the years since then as it’s harder for me to do things, we have stayed together dealing with all the joys and struggles of life. Each day is still a struggle, but I’ve got someone to help me.
im reliving my past through your words its incredible... i don't know the extend or your husband's damage or situation but for whatever its worth i can tell you a little bit my story if it can give you any kind of hope and relief... We discovered his avm 3 years ago in the left temporal lobe, after much thought to either embolize or open brain surgery my husband thought embolization would be best since he's a doctor and thought once they touch your brain it will never be the same :-( well, i regret so much and live with the guilt that maybe the surgery would have been better.. we embolized on Dec 19, 2010 and the day we got home from the hospital on the 24th as we were celebrating that everything had gone well, he suffered a hemorrage from the small percentage that was left over. we rushed him to the hospital for emergency open brain surgery. The doctor said he saved his life and the rest was unknown, he didnt know what to expect as far as recovery. We spent 3 weeks in ICU at Baptist hospital in Miami Florida and i would also give him soda with the sponge stick. every little movement he did was celebrated by me and our girls ( 3 daughters) what seemed to be the worst nightmare possible very slowly started to fade and i started to see light at the end of the dark tunnel.. after 3 weeks at baptist, we moved him to a rehab hospital where it broke my heart to see the love of my life, brilliant person had to say if the drawing on a picture was an apple or an orange. with time he walked and talked and now 3 years later he could run if he wanted to and he's practicing Again!! he does have aphasia and homonomymous hemianopia which is a vision field issue that bothers him a lot but with antidepressants and our support hes doing good. if you want to talk to me i offer you my friendship and support. you can inbox me and i will give you my cell. please be strong for him and your kids because if not it will be very easy to fall apart.
It was scary to leave the PICU for all of my family-they said. They had been there for more than a month- they tell me. My brother and three sisters and mom had been living in the hospital the whole month. Everyone helping me had become part of our family. So had the other families with kids in the PICU. But it was good for me to go to “The Floor”. Then it was scary to leave the 12th floor, the neuro rehab floor. We all lived there for 3 months. My whole family lived in my room. Then, it was scary to leave the day treatment program. Each time we became like family with all the doctors and nurses and even the other families. But, each change was good for me. I hope that’s true for your family too.