First Eval at VA SCI Center

[LindaT]

We will be going to the VA SCI center next week for my husband's first eval. He will be admitted for three days.
Some of the acrynoms on the appointment list are confusing, but I'm sure we will find out more when we get there.
I've talked with the coordinater a few times and she was helpful.
Even though it is only about 4 hours away we will have to stop for weight shifts etc so it will be an early day.
My sister is coming along and we will stay at the Fisher House.
I'm a little nervous as I don't like to leave him alone there at night.
When he does not have his speaking valve on he can't call for help etc. I told her he needs suctioning sometimes at night and she said they will have an RT for him. We are bringing our own vent that he uses at night, but they have cough assist and Vest percussion.
He has a lot of meds and also 2 types of insulin 4X a day.

On the other hand we are so excited to go to an actual spinal cord center and so grateful he was accepted-and for the people here that have been so helpful to me. I'm sure they are the pros and we have heard wonderful things about this center.

My hope is that someone can properly position him in his chair-it has been a while and there is no one in our area that can. With weight gain and loss and posture changing, things on the chair loosening up up he needs an expert.

Thanks for listening to my worries.

[Oldtimer]

Good luck with your appointment and have a safe trip. Let us know how it went. I think they might want you there by 8:AM, gonna be a short night, watch out for deer!

[rdf]

Good luck to you and Dave, Linda. It hopefully will give you guys peace of mind to actually be seen by people who have experience with SCI. While you're there, ask everything possible you can think of. You might start a list of things you'd like to ask about so you don't forget some things. Seating is so important, I hope they have someone like our own SCI_OTR that can get him dialed in.

[trekker6]

I just got accepted as a priority 4, my overnight is next month, so far so good, I'm sure they'll take good care of him, they put me up in a great hotel suite when I went last month, I was expecting a dive and they accommodate families too. good luck

[SCI-Nurse]

They are required to provide him with a call light he can use when in bed, so just be sure they set this up. We have one called the EZ-Call (http://www.google.com/imgres?imgurl=http://image.wisdomking.com/images/pictures/0/122/photo_77.jpg&imgrefurl=http://www.wisdomking.com/product/e-z-call-universalquadriplegic-nurse-call-switch&usg=__BUkhAcUeZOyZVzsor6rNmgCr4kk=&h=330&w=300&sz=13&hl=en&start=1&zoom=1&tbnid=OATJtOasZvxw4M:&tbnh=119&tbnw=108&ei=u3KIT9O4MIeTtwfLzNHOCQ&prev=/search%3Fq%3Dez%2Bcall%26hl%3Den%26safe%3Dactive%2 6gbv%3D2%26tbm%3Disch&itbs=1), which can be used with head or slight arm movement, unless we set the patient up with one of our unit ECUs (which is what we normally do for the high tetras).

Talk to the head nurse, CNS or charge nurse when you arrive. They can show you all the procedures, what to expect, and reassure you about measures in place to assure his safety and good care.

(KLD)

[Bonnette]

Linda, I am so glad to read this news. You will probably have so much useful information at the end of these four days! It's natural to feel uneasy about not being together throughout the whole time, but he'll be in good hands. Please let us know how it goes. My thoughts and energy go with you!

[Tonko's Mom]

I think I recall reading some of your earlier posts about this that you were going to the Seattle center? If so, my husband who is a C 5-6 quad has had great success with the seating and fitting he had done there when we lived in Seattle three years ago. They ordered whatever he needed to ensure he was properly seated and positioned and were very experienced and knowledgeable regarding available options. He was never an inpatient there but the therapy area served both inpatient and outpatient so we met several inpatients who spoke highly of the unit and care they were receiving. Hope all goes well on your trip and during your stay.

[baldfatdad]

Make a typed list of things you want to discuss with the people there. Have a few copies that you can give, doc, PT, etc and keep one for yourself so you can make notes and check off what's been taken care of and what's not.

[SCI-Nurse]

Actually, I think that they are going to Minneapolis, not Seattle, since they live in South Dakota. Minneapolis is one of the newest SCI centers, and they have a great team.

(KLD)

[LindaT]

We live in MN, on the ND border.
He is going to be admitted Monday at noon, but his appointments are Tue and Wed.
I'm really glad they are doing it like that.
The social worker here called to remind me to ask about bowel and bladder training so I can be paid for it.
The coordinator there said to go to the travel office and we can be reimbursed for gas, but the local one said we had to fill out a form and bring to them.
We will find out when we get there. At the price of gas and the gas pig van it would be a big help.
I've got a folder of records, meds, lab etc from his last appointment and his picture ID came last week.
Thanks for the good wishes!

[gjnl]

Linda,
I'm really excited for you and Dave to get this opportunity. Everyone has such great comments about this center, it should be a very productive visit.

All the best,
GJ

[faceplant]

Linda ~ the Minneapolis facility is beautiful I have been there during a clinical rotation on other areas of the VA years ago, but was there last year visiting a friend. It's a big facility but you can always find someone to help you find where you need to go. I hope the SCI center works well for you. Hopefully the weather here clears up and will be warm for you to enjoy. Best wishes to you both!!!

[woman from Europe]

Good luck, Linda :)

[Tonko's Mom]

Guess I was thinking about someone else I met recently who was talking about Seattle. Anyway, I think you will be pleasantly surprised with how quick the VA is to provide you with the equipment and supplies that you need for him to stay healthy and as functional as possible. We went for nearly 20 years before we discovered Mark was eligible, thanks to KLD! It is in dramatic contrast to what the typical traditional health plan will provide. Best wishes and safe travels!

[skippy13]

Good luck today Linda and Dave! I hope it turns out to be the best thing for you both.

[SCI-Nurse]

Linda, are you home yet? Would be good to know how the annual evaluation went and how you felt the quality of the care was for your husband.

(KLD)

[LindaT]

We got home last night. I can't say enough good things about what a nice facility it is and how good it was for Dave to meet some other guys in chairs.
There was so much to do on his chair and positioning that his stay was extended.
We will return in a few weeks when more parts come in.
The doctor and OT suggested trying a head array (?) instead of the sip n puff.
My sister and I stayed at the Fisher House-what a wonderful place.

[SCI_OTR]

We will return in a few weeks when more parts come in. The doctor and OT suggested trying a head array (?) instead of the sip n puff.

Good to here it went very well. Was his OT Wendy?

ASL 105 Head Array...

http://sci.rutgers.edu/forum/showthread.php?t=173766

[LindaT]

His OT was Chris and he was awesome and really understood the positioning issue.
He got pressure mapped and turns out the cushion he has is doing the job.
There are some new parts coming that should get him sitting up straighter.
The wound nurse reccomended an air bed and sent a referal to our local VA. His skin is excellent and we want to keep it that way.
I was glad be brought the manual chair along for some tune ups.
They have ordered a new one that should be less hard on my back when do the tilt for him.
They really spent a lot of time with the power chair.
Also on the lower carb/diabetic diet he has lost 12 pounds since January.

[Bonnette]

Linda, this is just wonderful news. I can't tell you how happy I am for you and Dave about this whole experience.

[Oldtimer]

Thats great news, I'm glad you got some much needed help!

[lynnifer]

Somehow I missed this - finally something good! Congrats on him losing 12lbs too!

[gjnl]

Great news! You should be very proud of your achievements and proficiency in caregiving. Dave rates five stars for perseverance and cooperation.

All the best,
GJ

[rdf]

It's cool it all worked out well for you and Dave, Linda. Just being around others with similar problems helps us all, sci and caregiver alike. I'm glad you have to go back...I'd try to set up going 4 times a year if possible.

[skippy13]

I'm really glad that it worked out well for the both of you. At first it will seem that you will have to go to the MPLS VAMC all the time. When they get to know him a bit and his needs, it will be less frequent. Fantastic news about the chair!

I wonder how the travel pay worked out for you. Since they wanted to see him, you should get it. With gas prices so high it would be a huge help I'm sure. Same goes for any follow-up trips you have to make.

He should be entitled to the respite care program. He spends a few weeks at MPLS and gets a chance to meet and make friends with some of the guys in chairs. It is important to guys who don't get out and about much.

Another thing you might not be aware of...If (God forbid) Dave needs to go to the hospital for anything SCI and it turns out to be extensive care is needed, he can request that they transfer him to the MPLS VAMC for care once he is stabilised. They will transport him by ambulance (at no charge to you) to the VA. At least they do that here in Oregon. Policy should be the same anywhere. Would save thousands in medical bills.

Once again, I am glad that it was a good thing for the both of you.

[SCIfor55yrs.]

So glad you found a good place. I wish all SCIs had access to that kind of expertise and support. I get very mixed reviews about the VA SCI center in nearby Agusta. I know from my travels over the years that there is a wide range of quality in VA facilities.

[LindaT]

Yes, we did get travel pay which i was grateful. It was a little confusing and was told different things, but ended up getting a pink slip and discharge papers and going to the family area where they map quested the miles.
Then we just went across to the cashier and got $188.00.
On Monday when we checked in there was a mob of people waiting, but for some reason only a few when we left.
A nice couple showed me where to take a number and said I had "new" written all over my face.
I was told as of May they will credit the funds to a debit card.
What I liked about the SCI part of the hospital is that it was it's own unit away from the rest yet connected.
There were 2 funny volunteer guys in chairs who were always trying to help me. One told me to send up a flare and the other said he would bail me out.
The Fargo VA told me to talk to Mpls about bowel bladder program, but they told me to talk to Fargo and gave me a number and name to call tomorrow.

[cheesecake]

So glad that it worked well for you and that it was a positive experience for both you and Dave. It was a long time coming!

[LindaT]

So glad that it worked well for you and that it was a positive experience for both you and Dave. It was a long time coming!

It as a VERY positive experience. The OT helping with the chair is exceptional.
We are excited to see how the "head array"works vs sip-n-puff.