Transitioning to Home

[Jloney]

This is my first post on the website. My 20 year old son has been at Craig Hospital since August 3rd and we are scheduled to head home on November 19th. He and I have learned alot here at Craig but I am scared about the transition to home.

We live in Minnesota and I am working on getting all of the paperwork done so that we receive home care as soon as possible. My son is a C4-C5 quad.

I just need some reassurance that we will survive the flight home and be okay outside of the hospital environment.

Thanks.

[Eileen]

You will all make it just fine. Not without some frustration, but it will work out. Now that I know you are in Minnesota you also have Courage Center in Golden Valley to help with local suggestions if necessary. I used to go to Minneapolis quite often, and was always secretly jealous of the glass connectors downtown that meant not having to deal with snow and ice. Very different from Boston, where getting around in a WC after a storm requires the patience of Job, the creativity of an Einstein, and the frustration level of...well, whoever.

[Jim]

What you are feeling is normal. I remember my Mom being quite nervous when I was discharged from Shepherd, and we were only moving 2 blocks away so i could continue as an outpatient. You'll be fine

[Van Quad]

I just need some reassurance that we will survive the flight home and be okay outside of the hospital environment.

Perfectly understandable for you to be concerned; this is a whole new reality for you to deal with. But unless there are underlying medical concerns, the flight home should be no more dangerous than before he was a quad. Make sure you stress to the airline how important the chair is. Survival of the wheelchair is always my primary concern while traveling.

As for life outside the hospital environment, many of us are C4-5 quads and live quite happily and successfully on our own. If he is going home to live with you, stress independence. Don't smother him.

[JakeHalsted]

My advice ? Take a train

Lost wheelchair MP slams Qantas
June 16, 2003

A FEDERAL MP today accused Qantas of gross incompetence after the airline lost his wheelchair for a second time.

Labor MP Graham Edwards launched a blistering attack on the airline after flying in to Canberra from Perth last night to learn his wheelchair was lost in Melbourne.

http://www.pprune.org/archive/index.php/t-93335.html

Mr Edwards, a Vietnam veteran, said travelling with Qantas was often stressful and described management as a disgrace.

"I've had enough. Last night for the second time in 12 months, I arrived in Canberra only to be told my wheelchair was still in Melbourne and would not arrive in Canberra for another couple of hours," Mr Edwards told parliament.

[mr_coffee]

Going home was super hard for me, brings back way to many memories of what it use to be like before being in the chair. Just prepare for it. It may be hard but everyone goes through it. Just try to make it as easy as possible and keep him busy, don't let him lay around all day. Try to get him out in public and take him on as many things as you can to show him he is still a person and can still go out.

The worse is when you know exactly how your next day will be thats when depression may set in.

[MSWIFE1]

Welcome to Care Cure, sorry you had to find this site but glad you did.
Everything will be fine. There will be good days and bad. This is all normal. It wasn't until we made it home that reality struck. Remember this site and come back as often as you need. No such thing as a stupid question. Take care of yourself too.

[Rrrrronnn]

Insist on a or "gate check" for your chair. This allows your son to stay in his chair all the way to the entrance of the aircraft, and then it goes with you on your flight, not a different aircraft. On landing, the chair is then brought back to the aircraft exit once everyone else is off. When they come to place your son in the isle chair to get him off the plane, ask if his chair is at the door, then go see for yourself BEFORE they place him in the chair. If they tell you "we're still getting his chair, let's get him out in the meantime," give them a flat out refusal! They will be much quicker to locate the chair if it is holding up the aircraft from departing for another flight. Once you're off the plane, it's no longer their problem.

My advice ? Take a train

Lost wheelchair MP slams Qantas
June 16, 2003

A FEDERAL MP today accused Qantas of gross incompetence after the airline lost his wheelchair for a second time.

Labor MP Graham Edwards launched a blistering attack on the airline after flying in to Canberra from Perth last night to learn his wheelchair was lost in Melbourne.

http://www.pprune.org/archive/index.php/t-93335.html

Mr Edwards, a Vietnam veteran, said travelling with Qantas was often stressful and described management as a disgrace.

"I've had enough. Last night for the second time in 12 months, I arrived in Canberra only to be told my wheelchair was still in Melbourne and would not arrive in Canberra for another couple of hours," Mr Edwards told parliament.

[quad79]

I'm more than confident that the ride home will be just fine.For me it was the transition back into life once I was home that was the hardest.I echo what VQ & coffee said.By all means encourage independence & as hard as it will be don't smother him.Most likely he will battle some depression as he's reminded of things he can't do back home,the difficulties surrounding his new life in general.He will come out on the other side though,your whole family will.Just trust me/us as we say that but expect some hard times getting there.

The most important thing is getting everything accessible(as you can) & especially putting things out on counters etc that he can easily have the ability to get to.Since he went to Craig I'm sure he got wonderful OT.You may still want to look into home OT though so they can help you brainstorm ideas around the house.Good luck.