nightmare

[SCI-Nurse]

I have never heard of a Medicaid limit on inpatient hospitalization for someone who is acutely ill. Are you sure this is accurate? It does not occur in my state. He will need at least 6-8 weeks of inpatient rehab, once he is off the vent and the pressure ulcers are healed. I would again refer you to the Joseph
Romano book below and to his office.

What is being done for his pressure ulcers now? This is the first you have mentioned them. Pressure ulcers that are deep may require surgery to close, and are unlikely to heal on their own without this. What type of bed is he on? Where are the ulcers? Is he completely off them all of the time? What treatment is being used?

There have been successful malpractice suits over acquired pressure ulcers in hospitals, but they are not easy cases to win. If you are thinking of pursuing this, please see an attorney ASAP. The hospital will not admit it made an error by paying for any of this care (their attorney would advise against this).

I only know of Jackson Memorial's reputation as a trauma center, but they certainly have more SCI experience than where you are now. Talk with them about possibly moving him to their acute unit prior to starting rehab.

(KLD)

[TD]

Hi, waters3 (Cindy?) [img]/forum/images/smilies/smile.gif[/img]

I have been following your saga and wanted to let you know that there is hope for your son's breathing problem. I was vent-dependent for a couple of weeks after my accident (a high speed head-on without seatbelts and now live with SCI and brain damage) but learned to breath using just my diaphram. I was weaned from the ventilator in about three days once I realized I needed to concentrate on using my diaphram to breath. It is not an easy thing to do. Luckily I once sang and used some of those techniques to help wean me off. Let your son know that there are several members here who can relate to what he is going through and we are all pulling for him.

"And so it begins."

[waters3]

Well,

Finally after some discussion from a family friend who used to be a trauma dr. for over 30 years in Chicago and some research on the internet I think we have a explanation for Anthony's not able to communicate. It sounds exactly like Expressive Aphasia. This on top of everything else is a nightmare. The only thing we are confused about is why he was able to communicate by mouthing words like normal and everything to us for the first 4 weeks in the hospital. And we were told his catscan and mri did not show any brain damage. It seems as though it happened right after a plug in his traech and then his jaws were wired shut for 5 weeks. He never was normal after that. Are there any forums out there that might be able to help us with this now; want to talk about progress, recovery and therapy, etc. The neurologist just explained it to us as brain damage to the left side of the brain did not indicate how much, said it didn't matter how large the damage was that damage was damage. and doesn't know if this is what is causing his non-communicative state.

Cindy Waters
mom to anthony
c4,5,6 injury 3/28/03

[Wise Young]

water3, I think that your son will get better from this. It will take time and speech therapy. The first order of business should be to get him off the respirator so that he can speak using his own breath. The longer he stays on the respirator, the more difficult it will be for him to get off. This is because the diaphragm gets weak when the respirator is breathing for him. He needs to be weaned and as soon as possible.

Once he is off the respirator, there are a number of approaches to try get around and reverse the aphasia. He will need to start making sounds and exercise his vocal cords. You can try to get him to hum and sing along; the brain areas that mediate singing are outside of Broca's area (the part of the brain that mediates talking). He will need a lot of speech therapy to relearn how to vocalize.

In general, it is important to set goals that are achievable and then reset them to higher levels as he recovers. This prevents frustration and the positive feedback from meeting goals gives motivation to work on recovering the function.

Miami has much experience with acute care and they have a very good physical therapy department. They also have a good biofeedback program.

Wise.

[waters3]

Anthony is not fully dependent on the ventilator. He is on CPAP for 10 to 12 hours a day. I was told this was basically breathing on his own? At night they put him on a rate of 8. He mostly has great days and maybe in between a not so good day. We are hopeful that when he gets stronger and pressure sores healed and his nutrition adjusted properly; they say he is low on protein and are tring to find out why. Is CPAP breathing on his own?

[SCI-Nurse]

No CPAP is not the same as breathing on his own. People with SCI do much better weaning from the ventilator by being off completely (no vent, no CPAP) for multiple short periods of time during the day, then gradually lengthening each of these periods. This builds strength in the respirtory muscles gradually, which CPAP does not.

I suspect his protein is low because he has large draining pressure ulcers and has not been able to keep up with his body's demand for protein which is increased by acute injury, stress, and trying to heal. Instead of trying to find the cause, the treatment at this time should be to super-supplement his nutrition, and perhaps consider a short course (6-8 weeks) of an anabolic steroid. The safest one to use for this purpose is Oxandralone. Because it helps to build muscle mass, it has been helpful in many people with SCI during vent weaning. It also has been studied extensively as a helpful drug to increase the speed of pressure ulcer healing.

(KLD)

(KLD)

[marmalady]

HI, Cindy,

Sorry I haven't posted sooner, but we've been in the throes of moving and I've been off the boards for a while.

My son is a C4-5 with a brain injury, also; his TBI affects mainly his short term memory. He was also on a vent for about 3 months post his accident, and then weaned successfully while at Kessler Rehab. The docs in the acute care hospital told us there was a 75% chance he'd be on the vent forever - so another reason never to believe what they say - they just don't know - no one does.

Also, like your son, my son's initial CAT scans and MRIs were normal; then, 3 months post, he had a horrid seizure, was transferred to an acute care hospital from rehab, and when he 'awoke' from all the meds, he had no short term memory at all; couldn't remember the accident, or that he was paralyzed. We'd tell him what happened, then five minutes later he'd ask the same question.

Recovery from a TBI is a long process, and when combined with SCI, it can take even longer. I'd recommend an eval by a neuropsychologist, who specializes in cognitive rehabilitation, as well as the speech therapy mentioned before.

Here are a couple of TBI websites I've found helpful:

www.neuroskills.com

www.tbiguide.com

There are links to TBI boards and chat rooms, and a download of an excellent publication about TBI recovery.

Hope this helps; feel free to email me if you like, or have any questions. Dealing with the double whammy of SCI and TBI is at times totally overwhelming. Jackie

_____________
Tough times don't last - tough people do.

Thank you Marmalady for the reply and information on brain injury. Just an update on some things. The injury is on the left side of his brain. It seems that the only thing it is affecting is his unability to form words with his mouth. Everything else is functioning. He can read, spell, understand everything we say and knows what to say but can't. Just in the last week we have seen progress though. His swallowing has improved greatly. Speech Therapy conducted a blue dye test yesterday and he swallows on command now and easily, until they deflated the cuff on his trach. Then the fluid they gave him did not go down correctly. They said they are going to just keep on excersising his tongue, swallowing muscles, etc. I have read up on Expressive Aphasia and Apraxia. It does not seem to be Expressive Aphasia in regards to that he can understand what we say, can read, spell, etc. but more toward Apraxia. Has anyone out there had similar experiences or know anyone who has? or can shed some more light on the situation. If this is the wrong forum to ask are there any forums on this subject that we can talk to people like this one? Also we were told that Anthony could go to Jackson Memorial for rehab since no other facility in Florida would accept him for rehab while he is on the ventilator. Unfortunately he has acquired such bad pressure sores he cannot. We are now trying to get him into the spinal unit at Jackson memorial at least. This will give him great benefits as where he is now is not experienced enough for SCI patients. Does anyone know of any physician at Jackson Memorial spinal unit that we might be able to contact to explain our situation so that his doctor can help us with this transfer. Thanks to everyone.

Cindy Waters
Mom to Anthony c4,5,6
still in hospital, tampa, fl

[SCI-Nurse]

These are the people I know there:

Kathleen Klerk, PT
Assistant Chief, Spinal Cord Injury and Neurotrauma Rehab Units
Jackson Memorial Hospital
Miami, Florida

Marca L. Sipski, MD
Project Director, South Florida Spinal Cord Injury Model System
Medical Director, Rehabilitation
Jackson Memorial Hospital
Associate Professor
Department of Neurological Surgery
University of Miami School of Medicine
Miami, Florida

(KLD)