Oxygen needed for grandpa

[BobaFettFan]

We had a trip planned for 11/14/21. We fly out 11/13/21. This is supposed to be the "last great trip" with for my father in law, my wife and her sister, and my son ( his grandson). We're flying in from Washington state.

Grandpa did not require oxygen before. As of today, he's in the hospital under observation and the doctor is unsure if he can even fly, but will let us know.

I've never had to use a portable oxygen concentrator or had to purchase O2 canisters. I talked to the medical supply store and learned we need a rx and they'll be able to rent us a machine.

My question is what companies can I reach out to and make appropriate accommodations for my father in law.

Also any anecdotes from people with oxygen in the parks.

My wife is besides herself, but she always thinks the worst is going to happen. I'm an optimist though and I'm working with the idea grandpa will get to go on this trip and we can all laugh about it for years to come.

The more information I can give to my wife, the better she'll feel.

Thank you all. He's a good guy. He deserves this vacation. I want to do whatever I can to see him get there.

 

[SueM in MN]

You won’t be the first people to travel to WDW with oxygen, but the recent nature of him needing it, the unknowns and how soon you have to get it all organized will make it more complicated.
The company he ends up dealing with at home may be a nationwide company with a branch in the Orlando area or a company they have worked with before.
For the actual air travel, you would work directly with the airline. Check on the airline website for a Special Needs department and they may have a specific page or department to contact for travel with oxygen. Also, contact TSA Cares - the services available vary a bit from airport to airport, but they are TSA’s support department for travelers with disabilities or medical/special needs.
You can rent or purchase a wheelchair from home and bring it along with you. Mobility devices fly for free; he could use it right to the door of the plane and gate check it. You don‘t want to put any medication or any medical equipment that would be difficult to replace in checked bags, but a suitcase packed with only medical supplies can fly for free.

There is a post in the disABILITIES FAQs thread specifically about travel with oxygen that has more details.
Link to disABILITIES FAQs Oxygen post

 

[SueM in MN]

No one can guarantee that he would be approved for DAS (Disability Access Service), but it is something you might want to look into. DAS allows waiting outside of lines for guests whose disability makes waiting in regular lines difficult.
The first post in this DAS Summary thread talks about the rest changes to DAS.

To help conserve energy, you may want to concentrate on attractions where he can stay in the wheelchair, or at least alternate them with ones where he would need to transfer to a ride car. Posts 18-21 of the disABILITIES FAQs thread has information about attractions that should help. Link to disABILITIES FAQs thread

 

[BobaFettFan]

You won’t be the first people to travel to WDW with oxygen, but the recent nature of him needing it, the unknowns and how soon you have to get it all organized will make it more complicated.
The company he ends up dealing with at home may be a nationwide company with a branch in the Orlando area or a company they have worked with before.
For the actual air travel, you would work directly with the airline. Check on the airline website for a Special Needs department and they may have a specific page or department to contact for travel with oxygen. Also, contact TSA Cares - the services available vary a bit from airport to airport, but they are TSA’s support department for travelers with disabilities or medical/special needs.
You can rent or purchase a wheelchair from home and bring it along with you. Mobility devices fly for free; he could use it right to the door of the plane and gate check it. You don‘t want to put any medication or any medical equipment that would be difficult to replace in checked bags, but a suitcase packed with only medical supplies can fly for free.

There is a post in the disABILITIES FAQs thread specifically about travel with oxygen that has more details.
Link to disABILITIES FAQs Oxygen post

Bless you!

That's exactly the kind of info that'll help my wife calm down and focus on what she can do and take control of versus what she can't.

 

[Betty Rohrer]

Bless you!

That's exactly the kind of info that'll help my wife calm down and focus on what she can do and take control of versus what she can't.

hardest thing for your wife to understand is even though this is new to you it is not new to airlines or Disney. slow down and take a deep breath and start asking questions. one step at a time

 

[cobright]

The more information I can give to my wife, the better she'll feel.

Thank you all. He's a good guy. He deserves this vacation. I want to do whatever I can to see him get there.

Step one ... relax. It's going to be okay.

After Step one... If FIL isn't already using an ECV, get him steady on one with practice rentals and trips to the store. When you rent one for the trip, they will have options to secure O2 to the ECV.

Funny anecdote A very cool ECV was zipping by, I still don't know the make/model, but my attention was drawn to smoke and a weird white light coming from the other side of it; that and the panicked look of its driver. What follows is what happens when you order a CHiPs Explosion (one in every episode I think) from Wish. The driver was freaking out and eventually just hopped off the thing and shuffled to sit on the curb. This prompted a nearby drunk world showcaser (who was not me) to call out, "It's a Miracle!" which earned hi a stern look from myself. There was definitley the sound of an angry fire within the ECV. My first thought was he was working on a hyper-quiet combustion engine ECV. So there was maybe a fuel tank with a cut-off valve and maybe someone oughtna kill the gas on this thing. Nope.

Long Story - Short, the ECV driver had been lubricating? (he said, "Seasoning"?) his O2 hoses from his O2 generator with peanut oil. I still down know why. But after weeks of not changing the vinyl tubing it was impregnated with O2 to the point of spontaneously combusting in the presence of the oil. More than that, I suspect he did a crap job eliminating leaks in the O2 generator's connection points because the plastic in those areas went up like flash paper as well.

So this doesn't sound like it will convince antone to haul their own O2 around ... but the funny part of this anectdote is what the young man said, while watching his ECV turn into an oxy-petrol torch. He said, "After that last time, I knew it was just a matter of time before this happened again."

 

[SueM in MN]

Using an ECV gives more independence and no one has to push him.
But, using an ECV means transferring to a wheelchair for some lines and only being able to use a very few of the wheelchair accessible ride cars.
Although he would not be expending energy walking while using an ECV, it can still be exhausting - the driver needs to be alert for other guests stopping suddenly or walking out in front of them and ready to stop quickly. Some people may not feel comfortable driving one and he may fatigue easily due to his new health problems and just getting out of the hospital.

If you have multiple people to push a wheelchair, you can switch out pushers, If he gets too tired driving an ECV, you don’t have options.

 

[tobikaye]

Sorry for all you are dealing with. Supplemental O2 is a game changer as you always have to remember to make sure to include it in the equation for doing anything outside the house. My sister has been on supplemental O2 since January 2020. It was 7 months before she got a POC because we did not have a diagnosis (PAH) for 4 months to know it was long term and then there were more tests to determine if she could lower her need. The pandemic and all of her testing limited our travel in 2020 to one family lake trip. This year, we have been to a couple of state conferences/meetings she had and did a 12 day road trip with 6 nights at WDW. We haven't flown, but I have done much research as we are currently planning 2 cross country trips in 2022. So below are things I have learned from traveling with my sister and her O2.

Since our trips in the past 2 years have been car trips, we just took her home based oxygen concentrator with us, but I know I have to find a supplier for trips we will do when we fly. I haven;t researched this yet so I am interested to see the suggestions you get for this.

(Note, my sister has a developmental disability and mobility issues that we have already traveled with, but the O2 was a total game changer for us.)

• Make sure that the doctor prescribes both an oxygen concentrator and a portable oxygen concentrator over the oxygen canisters. Make sure that the local medical company sends you is FAA approved for flight. They will usually only provide one battery for the concentrator and depending on liters needed, this may not last long so you might need to also purchase extra batteries before you can fly. You are required to have enough battery supply to cover 150% of your flight. Do not forget to include battery power for getting from home to the plane taking off and then from landing to your final stop of the day.
  • NOTE: Most airlines require that the person with POC not sit in an exit row or bulk head seat. Some even require that the person be in a window seat. This is so the hose does not block anyone in an emergency.
  • We have a 5 hour flight in July. We will need to cover almost 8 hours of battery need for the airline or FAA rules. So between flight and travel to/from the airport, we will need to make sure she has enough batteries to cover a total of 12-14 hours on those days.
• 
  
• When traveling, make sure you have all of your necessary supplies. I now try to make sure I have not only the necessary, but at least 1 extra of each item.. For travel with my sister this means 3-4 cannulas, 2 25' tubings, 2 connectors, all POC batteries, POC charger, plus her Bi-Pap machine and extras.
• 
  
• The bag that came with my sister's POC was not comfortable for her to carry so we purchased her a mini mesh backpack that she can put on her back when walking. We then also can strap it to the back of her ECV. Her EVC does not have a basket so I use large velco straps that have rings on them to hold items. If she were using her wheelchair, we would put on the back of her wheelchair. The key is to make sure that there is nothing blocking the filtration section of the POC.
• 
  
• Specific things for WDW that we needed to make sure to watch:
  • Making sure to remember to charge up the POC batteries as soon as we walked into the hotel room. If she had used almost 2 full batteries that day, I sometimes had to change out the charger in the middle of the night so all batteries were ready to go.
  • When getting on and off rides, make sure the hose does not get caught on anything/anyone and she was not pinching the hose to cut O2 supply.
  • Securing the POC during the attractions. I am used to bringing a bag with my camera equipment, but I felt I really wanted to make sure that her POC did not move too much so her hose did not come undone during attractions. If the car was a bench seat, it went right next to her and in between us. If it was a more exciting ride, like Slinky Dog Dash, then I made sure to hold the strap of the POC and put the bag between my feet.
  • Watch the battery charge so you do not catch it running out at the wrong time. We were okay at WDW, but had had a zoo trip locally where I forgot to double check and all of a sudden it was beeping like crazy and it needed to be change ASAP. It was okay since I was there to help her, but I literally had just gotten back to her from stepping away to get us some food and the line had been longer than expected. She has trouble changing the battery on her own so if it had happened 5 minutes earlier she would not have known what to do.
• 
  
• General things:
  • Exhaustion: My sister seems to go through periods of just being very tired quickly, especially if we have a busy days. Her POC is a pulse O2 so she has to actively remember to breathe more than on her constant flow home unit. So on days she uses the POC all day with little to no breaks means she is very tired and ready for bed early.
  • Nose dryness/bloody: On 2 liters this is not as frequent, but can happen. Check with the doctor on what to use to help with this since different reasons for O2 supply means not everyone can use the same stuff in their noses.

 

[DisneyOma]

Step one ... relax. It's going to be okay.

After Step one... If FIL isn't already using an ECV, get him steady on one with practice rentals and trips to the store. When you rent one for the trip, they will have options to secure O2 to the ECV.

Funny anecdote A very cool ECV was zipping by, I still don't know the make/model, but my attention was drawn to smoke and a weird white light coming from the other side of it; that and the panicked look of its driver. What follows is what happens when you order a CHiPs Explosion (one in every episode I think) from Wish. The driver was freaking out and eventually just hopped off the thing and shuffled to sit on the curb. This prompted a nearby drunk world showcaser (who was not me) to call out, "It's a Miracle!" which earned hi a stern look from myself. There was definitley the sound of an angry fire within the ECV. My first thought was he was working on a hyper-quiet combustion engine ECV. So there was maybe a fuel tank with a cut-off valve and maybe someone oughtna kill the gas on this thing. Nope.

Long Story - Short, the ECV driver had been lubricating? (he said, "Seasoning"?) his O2 hoses from his O2 generator with peanut oil. I still down know why. But after weeks of not changing the vinyl tubing it was impregnated with O2 to the point of spontaneously combusting in the presence of the oil. More than that, I suspect he did a crap job eliminating leaks in the O2 generator's connection points because the plastic in those areas went up like flash paper as well.

So this doesn't sound like it will convince antone to haul their own O2 around ... but the funny part of this anectdote is what the young man said, while watching his ECV turn into an oxy-petrol torch. He said, "After that last time, I knew it was just a matter of time before this happened again."

Are you saying someone had a scooter at WDW that was gas-powered? I have no idea what " What follows is what happens when you order a CHiPs Explosion (one in every episode I think) from Wish"? Where is your petrol (gasoline) coming from?

 

[cobright]

Are you saying someone had a scooter at WDW that was gas-powered? I have no idea what " What follows is what happens when you order a CHiPs Explosion (one in every episode I think) from Wish"? Where is your petrol (gasoline) coming from?

Sorry, throw back to that classic show where some fender bender would reliably trigger a huge explosion once an episode.

as happens once or twice an epoch, my first inclination was wrong. There was no combustion engine or tank of liquid fuel to worry about. There was just pure o2, running through o2 saturated hoses, in the presence of peanut oil ‘fuel’.

For perspective, about 6 years back I needed to cut up a fire truck driveshaft, case hardened steel about 6” diameter. The tool I made for the job was a 4’ length of black iron pipe plumbed to my bigges o2 tank with a hose and enough uncooked spaghetti to fill the snide of the pipe. If you just let the o2 trickle through the pipe, after about an hour the pasta has absorbed so much o2 that it just lights itself up with the energy of 100 suns. Closest thing to a real lightsaber.

 

[BobaFettFan]

Thank you guys.

Grandpa is out! They're able to get him a poc tomorrow. He'll only need up to 3 liters, so he'll be plenty covered. The doctors signed off on his flight, so no cross country road trip with him and I.

They said he probably needed O2 months ago but it just now caught up with him. The doctor said for example people live with diabetes for years before they get a random test done and light gets shed on it.

They initially told my wife it'd be months before they could get a poc machine to her father and she broke down on the phone. The guy helped work with insurance to find and deliver a loaner machine with ample batteries. I hope he realizes how much he helped us.

We were ready to dig deep and just buy a new poc, but I'm glad we didn't have to. He has to send it back after the trip, but we only need it for a couple weeks. My wife and I are thinking of making it a Christmas gift to go halves on one after the trip with him, but the urgency won't be upon him.

We had already paid for an ECV just to make his trip easier, but now he'll actually need it. Thank you all for tips and such with tubes. The airlines were contacted.

Now we can all get back to the normal stressors of a vacation. Arguing over reservations, who will go on what ride with the boy, etc. Before my wife was griping about BOG being pricey for what you get. Now she just wants to see her dad see the west wing with our son.


Just as an fyi, here's our trip that were throwing for Grandpa.

Saturday: fly in.

Sunday: MK -> BOG lunch -> merriest party

Monday: Epcot -> food and wine

Tuesday: HS -> home coming lunch -> lightsaber

Wednesday: HS -> Brown Derby -> Olga's

Thursday: AK -> home comin dinner

Friday: Epcot -> space 210

Saturday: MK -> steak house 71

Sunday: grandpa flies back safely

I spent many early mornings clicking to get those reservations! Told the wife we could push back the trip, but no way I could replicate my luck with reservations. It's time to show grandpa how much his children appreciate him.

 

[lanejudy]

Please do not post tickets to share, even for free. Personal contact information should not be posted on a public message board.

OP - please be careful of new posters who offer such services. It may or may not be legitimate.

I'd like to leave the thread open for those who have experience with oxygen at WDW.

 

[BobaFettFan]

Thank you everyone!

Here's the latest hurdle, btw. The Personal Oxygen Concentration they gave us is a pulse device. This means it can't work with CPAP which requires continual flow. How no one put 2 and 2 together on that is beyond me, but glad we caught it. That being said, we're now talking with insurance about getting a home-O2-concentrator to be sent to the hotel. The "at home" variety seems a lot easier to get, but there are still hoops to jump through. They're telling us there's a 10 day mandatory wait period, but we're saying his medical diagnosis wasn't discovered until before 10 days.

If we have to buy an "at home" variety or rent one, it'll still be a lot cheaper than a POC so we're all still smiles here.

 

[tobikaye]

Thank you everyone!

Here's the latest hurdle, btw. The Personal Oxygen Concentration they gave us is a pulse device. This means it can't work with CPAP which requires continual flow. How no one put 2 and 2 together on that is beyond me, but glad we caught it. That being said, we're now talking with insurance about getting a home-O2-concentrator to be sent to the hotel. The "at home" variety seems a lot easier to get, but there are still hoops to jump through. They're telling us there's a 10 day mandatory wait period, but we're saying his medical diagnosis wasn't discovered until before 10 days.

If we have to buy an "at home" variety or rent one, it'll still be a lot cheaper than a POC so we're all still smiles here.

I would suggest finding a company for rental in Orlando yourself, you will just likely need a prescription for them. I have not used anyone in Orlando yet, I was leaning towards trying Orlando Medical Equipment Rentals if we had decided to fly this past summer instead of drive. I still may need to use them if I can pull off a quick trip for may sister in January or February.

 

[BobaFettFan]

I would suggest finding a company for rental in Orlando yourself, you will just likely need a prescription for them. I have not used anyone in Orlando yet, I was leaning towards trying Orlando Medical Equipment Rentals if we had decided to fly this past summer instead of drive. I still may need to use them if I can pull off a quick trip for may sister in January or February.

We ended up calling Aprea. The travel branch called the local branch and all is good. I'm just waiting for the confirmation phone call to let out my breathe. It cost a little more, but everything should be good now!

*Knocks on wood*

*Knocks on Pinocchio*

Grandpa was very thankful. I guess his mom who passed before I met my wife had a trip like this planned for Hawaii. Her health declined sharply and they were never able to make the trip. Cue Grandpa getting ill immediately before his big trip. My wife has melted into my arms more than a couple times from stress of this and her job.

My wife's side is bracing themselves, but my wife married a very positive minded person! I took the week off, took over all medical phone calls for Grandpa, and will steer this ship out to open sea and back to safe harbors.

Where there's a will (and a credit card) there's a way!

Grandpa just called me while composing this post to thank me for what I've been doing. Told him he's already put in the work raising two daughters and now's the time to enjoy the fruits of that labor.

Note for future thread readers. Get battery chargers for the poc. Hard to charge up extra batteries with only the one device.