Need advice for a friend

deeDawntee, RN · Sep 16, 2007

I don't know what to tell you. The scenarios that you describe sound horrible for a family to experience. As a friend in this situation, the best thing you can do is to listen and offer support in that way. I don't think taking sides is what is best for your friend. If you can somehow help her vent anger so that she can restore some faith in the medical team, I think that would be the most beneficial. Is there a patient rep. service or other support service for pt/families with issues like you described? They can often provide a place for families to express concerns to a representative of the hospital and help mediate a better relationship between family and health team.

I am sure there is responsibility on both sides in this issue. No doubt the medical team did things that weren't helpful and the family given there unbelievable high level of stress and shock are hyper-sensitive.

I can certainly imagine both sides of this issues, can't you?

What a horrendously, brutal ordeal for your friend. The best you can do is just be there for her, and I mean ongoingly, I would suspect that some people are there for her now that will stop because of a sense of hopelessness that they aren't helping her. Just be that steady unwavering, unconditional presence and that is the very best you can do.

:icon_hug:

Alpha13 · Sep 16, 2007

1. They said that Jason's condition Will Not Improve.
(we know they're wrong & my husband said that they're not God So to shut up. We are very optimistic with what the outcome will be) I would also like to note that there is still swelling at the top of Jason's spinal cord & they can't even see what or if there is any damage to the spinal cord. The swelling can be causing the temp. paralysis. The roots to the spinal cord ended right above where Jason's back was broke. The surgons did not want to explore while they had jason open to see if there was any damage. That will more than likely be another time. My point is that they don't even know the extent of the damage Jason has, yet they predict that he will not improve. God will show them wrong.

I will never understand how these religious types draw conclusions.

Explain to these people that medical opinions are not wild speculation pulled out of the air and that they should listen to them instead of just assuming that some divine intervention will happen and magically cure their child. This sounds harsh but it's better to bring them to reality now than let them hope and sulk for a lifetime.

GingerSue · Sep 16, 2007

this is a very unfortunate accident that the boy has suffered

The shock of it must be very stressful for all.

The boy's well being is of concern.

When someone in my family was in hospital, I found it helpful

to write things in my own file once I returned home. I kept track

of each person that I spoke to, what they said, etc.

I found that there were staff who listened and responded.

Maybe for your friend, let them know that you are present to listen (and this is with the thought that this is going to take some time for the outcome to be realized).

Let her know that you care.

If she has ongoing concerns about her son's care, then speak to the people in charge.

leslie :-D · Sep 16, 2007

I will never understand how these religious types draw conclusions.
Explain to these people that medical opinions are not wild speculation pulled out of the air and that they should listen to them instead of just assuming that some divine intervention will happen and magically cure their child. This sounds harsh but it's better to bring them to reality now than let them hope and sulk for a lifetime.

with all due respect, alpha, i do not find this response helpful.

the parents, understandably, are experiencing incredible stress and anxiety.

i can't truly say they're in full denial, IF it's true that no one knows the extent of damage r/t cord swelling.

but still, even if all diagnostics were done and a firm prognosis was made, it is still very natural to deny.

their son is still hospitalized: the injury is still so new.

i fully agree with dee.

they are going to need neutral, ongoing support.

if God lets them down, that is another crisis they will have to endure.

i think it would benefit the parents, to get a prn anxiolytic from their pcp.

but other than that, little is going to comfort them.

they need someone to listen to their nightmare, and be there in the long run.

heartfelt blessings to this family in crisis.

leslie

woody62, RN · Sep 16, 2007

I have managed several severe spinal cord injures. Yes, it is somewhat early to consider what the final outcome will be. However, if I understand correctly, both nerve roots were severed. If this is true, it is highly unlikely that they will spontaneously rejoin. Even if the nerve roots were only crushed, the damage to them is likely permanent.

All this being said, the parents need support of their family and friends. God may intervene but the parents should be prepared to accept whatever he decides. The reaction of the nursing staff is not all that unusual. They have seen many of this type of injury. And they have seen the most likely outcomes. And to protect themselves, they may take a rather strong view of what they may see as the folly of the parents. They are neither right nor wrong.

I am surprised that no one has brought up the Bills football player. There is a major difference. His internal temperature was lower to 92 degrees within a short period of time following his injury. And his injury was lower down his cervical spine. And his spinal cord was not severed. Unfortunately, none of these is apparently true of this little boy.

I'll pray for him but unfortunately, I believe he will be a vent dependent quad. Sorry but his injury is just too great despite the doctors not fully exploring his spinal cord at the time of his surgery.

Woody:balloons:

feebebe23 · Sep 16, 2007

I would like to add.....we all know and have witnessed the power of prayer with respect to recovery. With this family.....they were told he would never live off a vent, never sit up, never eat, ect....

He is now off a vent, talking, eating, and can move his left arm on demand....so he has already defied the doctors....so I can understand the parents perspective of wanting to be hopeful.

Noryn · Sep 16, 2007

With spinal cord injuries the general rule is you hope for the best but prepare for the worst. Typically it takes up to 2 years to know exactly how much return you will get back. Some people may continue to improve after that though. Ask if he got the high dose steroids upon arrival to the ER, that is associated with a significant improvement.

His parents need to really get him to a good spinal cord injury center for rehab. Yes I will make some people mad but will still say it--a skilled nursing home will not be adequate. Start asking about Craig or Shepherd center now. Get social services to assist them with this.

As far as hospital care now, in my experience what they have seen unfortunately is common. Care is so pitiful now.

EmmaG, RN · Sep 16, 2007

I would like to add.....we all know and have witnessed the power of prayer with respect to recovery. With this family.....they were told he would never live off a vent, never sit up, never eat, ect....
He is now off a vent, talking, eating, and can move his left arm on demand....so he has already defied the doctors....so I can understand the parents perspective of wanting to be hopeful.

Exactly; never say never, especially with a child.

I hope the above poster soon learns that religious beliefs and spirituality are a very important aspect of our patients' care and well-being. It gives them solace and hope. Who are we to take that away from them?

While what you describe could be considered a form of denial, I don't always consider that to be a bad thing. Without it, many would just give in to the "inevitable" and not fight to improve their chances of recovery. And like you, I've seen far too many unexplained recoveries and remissions to discount the power of prayer and faith.

These parents are on overload. It sounds like she has reached almost a panic state, where she feels she can't trust anyone. This loss of control and helplessness needs to be addressed; is there a patient advocate at this hospital? Someone who can step in as a liason between the family and the staff? If there were a way to calm her fears and begin to establish some trust, perhaps then she would feel comfortable enough to get away for a time and decompress.

I remember reading about this situation in your other thread. To have lost one child so recently, and then to have this happen... I can't imagine what these parents are going through. My prayers continue to be with this family.

HM2VikingRN, RN · Sep 16, 2007

A very sad situation. The family is having very real grief/loss and guilt issues. The last thing they need is to have their faith and belief in the power of prayer questioned. This is a very young child and I guess that I would not disount any possibility for improvement. Spirituality and support for spirituality are a very important part of recovery for the family system. Being willing to listen quietly and objectively is a part of ministering to this family in their time of need.

RunnerRN, BSN, RN · Sep 16, 2007

I remember hearing this story back in August. Glad for the update, but this story still breaks my heart. I was really trying hard to side with the health care providers up until the point of the post op distended belly. I'm sure things have been exaggerated some by the mom, but that just sounds awful. And to get advice from a stranger to (paraphrasing here) forget about God, they just need to accept what is happening and move on....that's just cruel.

I remember reading about a woman whose daughter was in the ICU for months with a head injury after a MVC. She kept a journal and just wrote and wrote, everything from her daughter's vitals to lists of things she needed to do, to just questions and thoughts. She said it really helped to get things off her chest and keep things all in perspective.

Our prayers are still with your friends!

EmmaG, RN · Sep 16, 2007

With spinal cord injuries the general rule is you hope for the best but prepare for the worst. Typically it takes up to 2 years to know exactly how much return you will get back. Some people may continue to improve after that though. Ask if he got the high dose steroids upon arrival to the ER, that is associated with a significant improvement.

Good point, but I don't think I would ask the parents about that. In their state, I think that would just increase their distress by adding to their list of "what ifs". They are having enough difficulty dealing with the present and future. At this point, I'd think the question is moot anyway.