Question
In the early stages of care for C1-C2 quad, what should we expect:
1.  What type of mattress should he be on?  He's on a thin air mattress which doesn't adjust air pressure.
2.  How often should he be turned or his position altered?
Seems like they don't change his position much if at all!
3.  He has a sip/puff mouth call button for the nurse.  They do not respond quickly enough.  He is anxious and this is all so new for him - surely after only a couple of weeks post injury and with such a high level of injury, they should be responding immediately?
4.  They have not set up any systems for him in terms of communication.  His family made a letter board, but the hospital have had no therapists or specialists come in to help with establishing methods of communication.
5.  Shouldn't he be getting physical therapy every day?  He doesn't have any passive range of motion exercises.

I would really appreciate any opinions, ideas, or resource information.

Thanks,
Bridgette

Answer
It depends on the type of air mattress.  There are some that do pulsing waves of air pressure and it's not really noticeable.  

He should be turned every 2-3 hours to prevent pressure sores.  If he is on a pulsating air mattress, turning is not as necessary as it would be if he were only on an egg-crate type of foam mattress.

Unfortunately, the speed of response is lacking in most facilities.  Often, this is due to limited staffing.  If the lack of response has been life-threatening, you should contact the unit supervisor.  If you get no action at that level, address the issue with the hospital administrator and the hospital's patient advocate department.

A speech pathologist or occupational therapist should be involved with setting up some form of communication.  Although the doctors may be waiting to see what level of function returns, it is still vital that the patient can communicate.

In this initial period, the concern for passive range of motion is not a high priority.  It will be very important as the time post-injury gets longer in order to avoid muscle contractures.

The best resource for your is the team that is taking care of him.  Set up a meeting with them to discuss all of your concerns.  It is important to be actively involved in his care since he cannot be.  It will greatly improve his outcome.

Resource websites include the Christopher Reeve Foundation, the Miami Project, and the Paralyzed Veterans of America.  All have good information on all levels of spinal cord injury.

Thank you for your questions, Bridgette.  I hope that my answers were helpful.