Reeve Foundation Paralysis Community

Hello,

I guess I'm just looking for a little advise tonight.  I have been at the hospital with my brother for the last week.  He was in a car accident and his neck was broken at c4/5.  The dr's say it is permanent.

He has a wife and 3 grown children (in their 20's).  The question of the night for his wife and children is whether or not to put a dnr in place.  Based on conversations with his wife and  family over the years, a dnr was a simple yes.  Now that we are here, it is not such a simple question or answer.  Some say yes, some say no. 

He is on a ventilator. His lungs have filled with fluid twice and had to be drained.  That has just extended his time on the ventilator.  What we all want most is for my brothers voice to be heard.  What is it that he wants?  We have tried to ask him - and we think that he wants to live.  We just aren't sure whether or not he is fully cognizant of his situation.  He is on so much medication - we aren't sure what he knows and what he doesn't know.  We want him to be able to make his own decision.  I was here with his daughter last night when he stopped breathing and his heart stopped.  What do I say to her?  What do I say to any of them?  I'm here with our mother and also needing to decide whether we go back home this week for a while or stay.  I need to get back to my job - I can wait a few days...  but don't know how long.

Anyone have any words of wisdom to share?  Some of you have already walked in these shoes...  maybe you can help...

I could write more - but I need to get back to the ICU for now.

- Marilyn   

 

This is a very unpredictable time -especially because every injury is different.  This website has a team of information specialists that can provide some information, resources and general guidance for you and your family.  The number is 800-539-7309 and ask for an information specialist.  You should try and talk with one of them.  They may be able to give you some of the tools to help navigate this situation.  Here is also a link to an area of the site that might get you started until you have the time to talk with one of them. 

http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.4514599/k.901E/Newly_Paralyzed.htm

What to say?  You have already said so much -just by being there, holding their hands, supporting them through this scary moment.  They will remember that more than they might ever remember the words. 

Marilyn,

 

I went through something very similar with my husband nearly 7 years ago.  He has a C3/C4 complete injury and was in very dire circumstances.  Really nobody gave him much of a chance for any sort of recovery at all.  Not only did he have a SCI, he also had a TBI.  He was vent dependant for nearly 7 months.  There were days where I was totally conflicted and thought that nobody should live like this, but other days when I felt like he deserved a chance to see if he could survive.  

 

He was really out of it for nearly 6 months.  Ultimately I never put a dnr in place.  I think only your family and/or your brother can make this decision, and what is right for one family may not be the right decision for another.  But I can tell you some of my thoughts when wrestling with this decision.  First, it is very difficult to predict the final outcome of a SCI so early on in an injury.  They might not say it, but the Drs. really can’t predict this either.  Some people in seemingly dire circumstances have made remarkable recoveries.  Second, we have 2 children.  I couldn’t imagine my husband not fighting with everything he had to stay around and be present for their lives.  Third, I had hope for the future that perhaps soon there would be some treatment or cure for a SCI.

 

In our case, the first several weeks he seemed to be worse and worse.  There were many complications and it seemed he would never turn the corner.  But slowly he did.  He didn’t recover in the sense that many would think as he is still paralyzed from the shoulders down with no use of his arm or legs.  But he did recover in that he is mentally present, off the vent and able to be at home participating in the lives of our kids.  He is so much more than any doctor predicted early on.  Not one doctor gave him any chance to wean from the vent, but he ultimately did.  They really didn't believe that he would ever speak or even eat again, but he does both very well now.  I'm not going to kid you, it isn’t easy because he requires a whole lot of care, but being able to participate as a father has brought him much joy.  We don’t count on a cure in his lifetime but still remain hopeful and keep our fingers crossed.

 

He can decide now for himself, and he is a full code status.  I guess that says something.

 

I am very sorry your family is in this situation.  My thoughts and prayers are with you all during this most difficult time.  Wish I could help more.  Hang in there.

---

Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Thank you all for your words of encouragement and support.

His family has put the DNR in place, but it was with much pain.  They are still wanting to get more input from my brother.  One of his son's explained to him what was going on and he believed that his father was in agreement.  But as I said before, with the levels of sedation, it is hard to say for certain.

For now, the Dr's have placed my brother under additional sedation to keep him calm and restful.  I sat with him for a while this morning, his children came in for the afternoon.  I did decide not to go and sit with him this evening.  There were two reasons, one, I am exhausted and two, he was still on the additional sedation and sleeping comfortably.  I would image you would understand the feelings of guilt that accompanied the decision.  But, I know it was the right one for me to make tonight.

I will take all this to heart, and contact the links and numbers you have provided.

Thank you again for responding.  It lets me know that there are people out there who understand and care.  You have also given me some hope.

- Marilyn