After much heartache and heartbreak

[pampam]

we can plan another trip. I know I haven't posted much lately, but I have had so much on my plate. Today I feel much better.

My sweet DD, as you may recall, has a myriad of health problems. A year and a half ago, we were planning a trip to WDW when she collapsed. Another full faint with secondary seizure symptoms. She was put on oxygen, and the dr wouldn't allow her to fly, so we canceled that trip. Eventually, the dr said she could travel, so we booked another trip. It was a whole new ballgame, because she is now on oxygen, and although we have been to WDW many, many times, the oxygen was a new experience for us. Still, we were optimistic, until she collapsed again in March. This one was different. I thought she was dying. I'll never forget it. It was horrible. The dr told us that she had a year left. Broke our hearts. By August, the dr more or less said if we want to take her ok. She could have troubles there, she could have troubles at home. Go, make some memories. She really wants to go back to WDW. It's her happy place. So, I was hoping to plan a trip, but the oxygen is such a struggle. Until I experienced it, I just didn't realize the logistics of it. We live in Canada, so it complicates things. Air Canada charges $300 for oxygen on the plane. I will have to rent a concentrator for oxygen in the hotel room $100. Each cylinder we rent is $35. If we use 4, it's $140 a day. We were hoping to stay 3 weeks, because she sleeps all afternoon, and it takes us longer to do things. Wow! that's a lot of money!! Now the big problem! We have to be at the airport 3 hours ahead of time. We cannot take cylinders on the plane. It isn't allowed. So, we need oxygen at the airport in Toronto, and once we land. The charge for that is $150 for them to clear customs and meet us at the gate with oxygen, and it's usually just not done. The only other solution would be to get a portable oxygen concentrator (POC). It would cost another $7000 with all the extra batteries and battery chargers. It just seems to get more and more complicated.

However, yesterday I got what I believe could be wonderful news. Our oxygen provider is considering getting a (POC) and we can rent it, or they may even loan it to us. They borrowed one from another office, and tested my daughter on it, to see if it would meet her needs. It tested better on her than they expected. I know it' s too early to celebrate, but I am soooo pleased.

So, please help me plan a trip of a lifetime, and I do not use that term loosely. I know it will be her last trip, and I'm certain it will be mine. I just can't imagine WDW without her. Any ideas, or suggestions.

 

[ss0414]

I have no words of advice for you; there are none. I feel your pain, as I lost my daughter, Sara, who was 20, on July 17, 2006. It is an unbearable loss at times, and one that is understood by few. I can only tell you that my daughter knew how much I loved her, there were no unspoken words between us and she knew I would have done anything to save her. It sounds as though your daughter feels the same. You are in my thoughts and I am here for you if you need me.
Have you contacted the Make-a-Wish foundation for Canada? I did a search and here is the web-site. I would think that they would be available to help with the medical logistics and making this trip to be what it deserves. Here is the website http://www.makeawish.ca/
I hope this works out for you and I am thinking of your family during this time.

 

[Heluvsme]

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.

 

[twinmum]

Like the others, I am also at a loss for words. Your love for your daughter is shining through, as is your pain. We faced the possibility of losing both of boys when they were born >3 months prematurely. While that was difficult, we realized that we were just beginning our journey of loving them. We feel so blessed that they came through.

Here's a link to the Children's Wish Foundation site in Canada (we know other people who have been granted a wish): http://www.childrenswish.ca/index_2007.php/en/national/page/4. You can contact your local chapter by providing your postal code.

Let us know what other questions you have as you plan your trip. You'll find the people here are wonderful.

Twinmum

 

[SueM in MN]

I don't remember how old your DD is, but just wanted to mention that the wish granting organizations already posted are for children uner 18.

I hope things all line up for your trip - it sounds like they are heading in the right direction.

To help you plan your trip, what sorts of things do you need help with?
Have you planned where you are staying, or do you need suggestions for that?

Do you need ideas for things she would like/can go on, or do you know what she wants to see and need help planning how to do it?

The more information you can give us, the more we can help you.

 

[Camster0307]

My heart goes out to you. Please, please, please - let us know what you need! There is a wealth of knowledge and experience on these boards - tap into it! I travel with my daughter who requires O2 - I can try to help any way I can.
God bless!

 

[disneymarie]

I admire your courage and love with your daughter. I just returned from Disney this week from our first trip without my 29 yr old daughter, she passed away in Jan, This year. Last Oct was her last trip.

There is nothing as heavy on a parents heart then their ill child.
I did hesitate to go back, but had a 12 yr old having a birthday and my grandsons first trip.

I did have some difficult times memory times mainly at night. I skipped the parade and fireworks, just too emotional.
THe conductor on the train saw a moment pass on my face as I had reached down and picked up a few pieces of pixie dust......he told me to stop under the station to the right and ask for pixie dust,

The CM gave us a packet and had my daughter take some and make a wish or think of a good memory and throw it over her shoulder.... It made us feel love and closeness.
I wish I could offer help....there are several on the board that have lost family and Disney returns can be a difficult decision.

Disney is about memories, make lots of them get tons of pictures. I have some of my daughter at Epcot I never knew would be my last pictures of her.
Hugs
dianne

 

[lovedcookie]

Pampam -
I just wanted you to know that you and your family are in my thoughts and prayers. Best of luck with your Disney trip.
Erica

 

[pampam]

After many delays, I am now ready to start planning.

To begin, my daughter is 36 years old, so make a wish is out. She has down's syndrome, and with it a multitude of health problems, mostly connected to the heart.

Our respiratory therapist is really working with us, so that is a blessing. We are thinking of going sometime after Jan 10, for 3 weeks. However, it seems that while the portable oxygen concentrator is available in Canada, the battery chargers are not. They haven't been cleared by CSA for safety. Since it takes 3 hours to charge a battery, and 1 1/2 hours to drain a battery, we need 2 extra batteries, and 2 extra battery chargers as well as the battery in use in the portable oxygen concentrator. I'm thinking we can leave them at first aid and charge them up, while we are enjoying the parks. The respiratory therapist thought perhaps we could have the battey chargers sent to the hotel, where I could get them, thus bypassing the CSA regulations. She has to check with her manager, and will call me back this afternoon.

I put a call in to my travel agent to talk to the airlines, to see what is available, and the hoops we have to jump through to fly.

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.

 

[HopperFan]

I am the parent of an adult DS with Down Syndrome

 

[patticake3]

PamPam, my heart goes out to you. Your love for your daughter comes through in every word. I am sending you prayers and positive thoughts for strength and courage and wish you a trip filled with sweet memories.

I wonder if the local hospital in Disney can provide any support, assistance, and/or backup in terms of supplies/equipment if needed? I would definitely contact any medical support staff at Disney as part of your planning. They may have great insight based on experience, especially as it relates to the Disney vacation with special needs.

Keep us posted. Thinking of you and your daughter!
-Patti

 

[Forevryoung]

PamPam,

I will be in Disney till January 7th, I am bringing a few small things to decorate our room. If you contact me prior to me leaving for Disney on Jan 2nd, I will be more than happy to pass the stuff to you for your trip. And then maybe you can pass it onto someone checking in once your stay is over.

Let me know if you are interested and best of luck with your plans.
-Forevryoung

 

[petchie]

would it be any easier for you to drive from Toronto to the US and fly from there? Avoid the aiport customs?

 

[Schmeck]

Or even renting an RV and driving the entire way - or would that take too much time and be too stressful? January, the weather might be too tricky up north, though. At least in the RV, you could be charging batteries while you drive.

 

[pampam]

My heart goes out to you. Please, please, please - let us know what you need! There is a wealth of knowledge and experience on these boards - tap into it! I travel with my daughter who requires O2 - I can try to help any way I can.
God bless!

To everyone, a great big thank you. All of you have been so kind and supportive.

Camster, could you please let me know your experience with portable oxygen concentrators. I can't get the Inogen one battery charger. They won't ship it to Canada till it clears with CSA safety. I can get the use of the Lifestyle airsep, however. My understanding is you cannot use an external battery charger with the Lifestyle. The battery charger seems to be built in, so I could use it for 3 hours and than be down for 3 hours waiting for the batteries to charge. That sounds inconvenient. She is on 5 lpm, so the batteries might drain quickly. Does anyone know how
long the power pack lasts on 5 lpm?

For those who suggested driving, I'd love to, but I myself would be too stressed to drive. My husband can't take time off work to drive us- a 26 hour drive, and he's not really into WDW. Go figure!

Thanks again. I'm starting to feel that together we can get my dd to WDW and make some precious memories.

 

[Camster0307]

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.

 

[pampam]

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.

 

[Camster0307]

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.

 

[Cheshire Figment]

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.

 

[SueM in MN]

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.