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Old 12-01-2007, 07:35 PM   #16
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Pampam - My daughter doesn't use an oxygen concentrator. She travels with a portable liquid oxygen tank that I fill daily from a bigger tank at home.

We just got back from our trip - my daughter was on a ventilator and oxygen. The airlines and airport will not let you bring liquid oxygen. I had to wheel an "E" tank (which is gas) through the airport and then Delta(the airline we flew) charged $200 for them to provide the oxygen on the flight. When we got to Orlando, I had someone from my daughter's equipment co. meet us with another "E" tank to last us until we got to the hote. As for my daugher's ventilator, I travelled with two lithium batteries on the plane and had another shipped to my hotel. Each battery lasted 6 hours. I also carried the power cord on the plane in case we got delayed and I could plug her in somewhere.

Flying out of Canada, I'm not familiar with what you're rules and regulations are. We have a homecare company that has offices in Florida so they were able to get us much of what we needed down there and it was covered by our insurance. The only thing that was paid out of pocket was the o2 for the plane and airport. Do you have some sort of homecare equipment company for your daughter? They should try to help you find someone that can meet her needs while you're down there.

Please let me know if there's anything else I could maybe help you with. Good luck with your planning and keep us posted with anything else you may need.
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Old 12-07-2007, 06:19 PM   #17
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Hurry up...and wait. Hurry up.....and wait.

Well, the wheels are moving slowly, but I do have some progress to report. There is another POC available, and they are going to test her out on it on Tuesday. It is the Lifestyle by Airsep. They will lend it to us and supply us with 1 battery charger and 3 extra batteries. the batteries only last 50 minutes, so we will have to buy extra batteries and another charger. I figure we need 6 hours worth of batteries- 3 for waiting at the airport, 1 1/2 hours worth to get us from the airport to the hotel, and another 1 1/2 extra in case of flight delays etc. Each battery weighs 1 1/2 pounds, plus the weitht of the machine, oximeters, ect. so all total that's a lot of weight. In the meantime, we have a dr.'s appointment tomorrow. I will make the flight arrangements on Tuesday, and they will fax a form to the Dr. to be filled out and faxed back to them. The airline wants us to book the flight, pay for it, and if there are any problems and they have to cancel, they will reimburse us. So, we will go to the dr.'s first, and try to nip any problems in the bud, before we pay the airline. Once we pay for the airline, it's carved in stone, unless they cancel. So, once I'm sure of the O2, and get the doctors okeydokey, we will proceed on the flight. This sure is stressful. Time is wasteing, people are not returning my calls etc.

In the meantime, she is looking forward to this, wanting to discuss hotels and such. I am reticent to plan too much with her, and remind her we have to get the oxygen settled first, before we make plans. Again, thanks for all the encouragement.
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Old 12-07-2007, 06:57 PM   #18
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pampam - It was good to hear from you. Glad to hear things are moving forward - even if it is slowly. It stinks to have your plans in someone else's hands! But, you'll see, in no time at all, everything will start falling into place. Be patient - I'm sure you'll get there. Keep us posted.
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Old 12-07-2007, 10:39 PM   #19
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One thing you can do at the airport is park near an electrical outlet. If the Lifestyle will work from commercail power (as opposed to only batteries) you can operate it off the AC while waiting. Also, the battery(s) that were used in getting to the airport can be recharged while waiting.
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Old 12-08-2007, 12:25 AM   #20
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good luck on everything working out.
sending lots of pixie dust for her.

I looked at the website for the Lifestyle and noticed they have a pdf file of the patient manual that can be downloaded. I also noticed that you can download the patient manual for the powerpack battery charger from a link on that page - under the picture on the left side of the page, there is a link to click for accessories. The first click opens a page with a retractable cart, but if you click on the arrow at the bottom of that page, it takes you to the powerpack.
Don't know if you already have seen that, but thought it might be useful if you don't.
If I understand it right, it looks like the internal battery is 50 minutes and with the external powerpack with 3 batteries, it will go up to 3 hours 15 minutes before running out of battery power. The powerpack sounds like it takes 4 hours to charge fully, but if you power the concentrator off the powerpack when the concentrator's internal battery is not fully charged, you will have only 2 hours 30 minutes of power. Lots of figuring out to do!

I thought you said somewhere that your DD is on 5 lpm. I see that seems to be the top flow for the Lifestyle, so I hope it works out for her.

Now I thought I'd phone Disney, to see about resort availability. I got the code for the annual pass. I think I'd like to talk to special medical services. Is that a good idea? I just don't want anything to go wrong, and I suppose I'm trying to cover all bases. I of course need a handicap room, and I'll need to get a concentrator from an oxygen place, but what am I forgetting? If I can set this up first, then, I'll start thinking of special meals, pirates and princesses and making special memories.
When you get to that point, you will need to work with the Special Reservations department. Information about resorts, including that phone number is in the disABILITIES FAQs thread, post #7.
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Old 12-12-2007, 03:49 AM   #21
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Now we're making progress

Went to the dr. He's pleased we are going . He feels the collapses were caused by one of the medications she had been on since she went into heart failure the first time at 16 months. She has been off that med since June or July and is doing well, so hopefully we eliminated that problem. Of course, we can't be sure until she collapses again. She was tested on the Lifestyle, and tested very well. I took the machine to my meeting, but the alarm kept going off. Good thing I had other cylinders with me. I guess I'd better read the manual, huh? Anyway, the forms and requests have been faxed to Air Canada. Flight reservations have been made. Next step is making resort reservations. I will call this morning. Hopefully we leave in 3 weeks for a 3 week vacation.
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Old 12-12-2007, 06:20 AM   #22
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YEAH - things are coming together!
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Old 12-12-2007, 03:07 PM   #23
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Originally Posted by Heluvsme View Post
I'm at a loss for words. The love you have for your daughter is coming through so loud and clear, your wanting to plan this, literally, this trip of a lifetime is so heartwarming. I do hope everything lines up and comes together and this can happen, not only happen, but happen in an economical, convenient, healthy way!! Contact Make A Wish if you haven't already done so, the wishes granted by them are amazing and they always somehow make the impossible possible.

Keep us updated, I hope this happens quickly and just exactly as you need and hope it to.

I hope things work out.

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Old 12-12-2007, 03:26 PM   #24
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Good luck with getting everything worked out for this trip. I wish I had some wonderful advice or hint to offer, but all I can send are my good wishes.
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Old 12-12-2007, 05:38 PM   #25
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Have a wonderful time. Karen
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Old 12-13-2007, 03:34 PM   #26
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Now we have some plans..

We have our airfare bought and paid for, and our resort reservations made. We should be leaving on Jan 3, barring any problems, with the first 10 nights at OKW. Next, is 4 nights at the Poly, followed by a week at AS Mo. Any and all suggestions are welcomed. I still have to make some dining reservations, and hope to do a Pirates and Princess evening.
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Old 12-13-2007, 04:29 PM   #27
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What a WONDERFULLY long trip you have planned! The resorts you're booked at offer a nice variety - with proximity to different locations. DEFINITELY try to book some ADRs before you go. It's very hard to get into popular restaurants without them.

If you want to mention what your daughter is interested in, I'm sure the rest of us could give you some advice and opinions.
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Old 12-14-2007, 03:44 PM   #28
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Good luck with your trip PamPam!! I hope all goes well!! We were in the rooms right next to yours at All-Star Music in May 06 and I was hoping to run into ya'll but never did!!
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Old 12-14-2007, 05:11 PM   #29
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I have a 6:30pm (maybe 6:50pm) ADR for Garden Grill at Epcot on Jan 3rd if you want it (it's for 2)

I see that that is your travel day so probably you don't but I figure I'd offer
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Old 12-14-2007, 10:23 PM   #30
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Hope you have a Great trip!
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