MAW trip in 7 days-daughter on vent 24/7

[Camster0307]

I'm looking for a little support and reassurance.

Our MAW trip is in 7 days and my daughter has been hospitalized for the past 5 with a minor respiratory infection. She's doing well; stable; no fever and on oral antiobiotics. I'm grateful she has a trach because it allowed us to intervene much more quickly to fight the infection. She should be discharged by the end of the weekend and we all feel she should be able to go on her trip.

The only concern for me now is that she is requiring her vent 24/7. Usually she just needs pressure support at night, so the vent was coming with me anyway. She may now need to be on it all day. Has anyone done Disney with their child on a vent? And how about flying. MAW has already arranged oxygen for our flight, so there's no problem there. I just feel so bad because I'm afraid being on the vent is really going to limit the rides she goes on. I'm usually able to lift her on to most, so she doesn't miss much. But being on the vent will make alot of rides very difficult to manage.

I'm looking to hear from some people who have been there, done that and how it all worked out. My daughter LOVES the whole Disney experience so I know just being in the parks and around the characters, at this holiday time, will be wonderful for her. We don't want to reschedule this trip because this is the time of year we like to be there.

 

[eternaldisneyfan]

I have a trach and vent. I went last summer. I am not completely vent dependent but needed it almost the whole time at the world.

The most important issue is how many hours of battery you have. I have a unique set up that my parents designed. They built my ventilator tray so it only extends about 4 inches. We use an inverter through my wheelchair batteries. My vent (Newport HT50) also has a long internal battery. I never had problems. We did witness a family desparately searching for an outlet as the low battery alarm went off. You need plenty of battery power and always have an ambu bag.

The size of your vent/vent tray will affect what wheelchair accessible rides are available. I am assuming she uses a wheelchair. If you can describe her wheelchair and vent set up, I can tell you what rides she can go on. Remember that all shows are accessible.

Have the panel of the ventilator cover the control panel. And/or lock the settings. Curious children...

Be familiar with the tubing. All the places that come loose and things that break off. There is rough terrain and jostling. When I watched nighttime shows, we created a buffer zone so that Dad could get to me to suction.

I am not sure about her bathroom set up. I can be off the vent and transfer for the bathroom. I preferred the Companion Restrooms. You can get a list at First Aid. If you need a lot of room for changing a diaper or catheterizing, your best bet is the private rooms at first aid.

I am not sure about your breathing treatments or respiratory therapy. I used a portable neb. First Aid is always handy. Plugs are available throughout, especially in bathrooms.

Rain is a big problem. We worked out a system where a cut poncho covered the vent. But the day we forgot and the rain got on the vent--the vent wasn't happy. If a sudden downpour happens-keeping the vent dry is more important then keeping her dry. Because she is completely ventilator dependant, I would bring your second vent and store it in first aid.

Really as long as you are familiar with the ventilator and have adequate battery power, you'll be fine!

-Christamae

 

[SueM in MN]

If you haven´t checked it out yet, check out eternaldisneyfan´s excellent trip report. In addition to what she wrote in her reply here, the trip report is full of information that should help you.

 

[Camster0307]

Thanks for your responses. Fortunately, we've had the vent for a year now, so I'm quite comfortable with it - I've just have not had alot of experience venturing out with it since my daughter was only on it at night.

The vent she uses is an LTV. We use two rechargable lithium batteries that gives us about nine hours of power plus the vent has a built-in charge of one. We never had the vent tray installed on her wheelchair because she wasn't needing it during the day, but I do have a carrying case that can hang off the back. But, as you can imagine, between that, the suction, and oxygen plus her emergency bag, I'll be carting around alot of stuff.

I've done Disney plenty of times with my girls so I'm pretty familiar with all the attractions. It was just making me a little sad that, if she was still requiring the vent during the day, she may miss out of some of her favorite rides. For example, our first ride together at MK every year is Dumbo (I hold her on my lap). Don't know if we'll be able to ride this with the vent. I think I was feeling a little sorry for myself this a.m. - thinking of how much harder this is all going to be. But I spent all day with her at the hospital today and am happy to report that she's doing great and will be discharged tomorrow. That's the most important thing! And no matter what, we'll still be in WDW a week from today!

enternaldisneyfan - I would love to read your TR - do you have the link?

 

[Camster0307]

Ok, my bad. Just noticed the link in your siggy. I'll check it out!

 

[dclfun]

I'm glad your daughter is doing better! I have the same vent and am also on it 24/7. As Christamae mentioned the most important thing is the batteries. I have an external battery mounted on my chair that is used most of the time. Then I also have the two lithium batteries attached to the vent which of course would be best for transferring and would make transferring possible and also the inverter that "can" run the vent battery off my chair batteries. I don't usually bring my backup vent into the parks since I basically have three backup batteries but do have my ambu bag. In your case it would be a good idea to bring the backup vent and store it in First Aid as was also mentioned above. The CM's at the attractions will be able in most cases ( except for the attractions that can't be stopped, such as Peter Pan) to allow you time to gather your daughter and the vent to board. I know a young man who was a bit larger than your daughter ( looking at your photo) and they were able to transfer him on many rides with his vent. Some rides had vehicles available where they could leave him in his chair. I don't think they missed much! I'm hoping your trip is magical and that everything goes smoothly. We just got back from a few days at WDW. Between the decorations and Christmas music I'm certainly in the happy holiday spirit. Please post a report when you get back and I'm sure most of us on this board will be sprinkling pixie dust and wishing you joy.---Kathy

 

[eternaldisneyfan]

With the oxygen, you might be more restricted. I really am not sure about rides because I don't know the size of her chair. it's a small world and winnie the pooh are probably safe bets. I would take the suction bag off her chair when loading for extra room. Journey into Your Imagination and Living with the Land will probably work, too. AK has the best shows. You might check for outlets in restaurants and shows to plug in the vent and maximize the battery. If you decide to transfer, have that ambu bag and at least a suction catheter. I only transferred for Soarin'...

I hope you have a great trip!

 

[Camster0307]

With the oxygen, you might be more restricted. I really am not sure about rides because I don't know the size of her chair. it's a small world and winnie the pooh are probably safe bets. I would take the suction bag off her chair when loading for extra room. Journey into Your Imagination and Living with the Land will probably work, too. AK has the best shows. You might check for outlets in restaurants and shows to plug in the vent and maximize the battery. If you decide to transfer, have that ambu bag and at least a suction catheter. I only transferred for Soarin'...

I hope you have a great trip!

My daughter has a Quickie Zippie wheelchair. We fit just fine on Pooh;IASW;Buzz;Aladdin - any ride that has wheelchair-accessible car. My concern are the rides I was used to holding her for: Dumbo;POC;HM and various others. I would LOVE to take her on Soarin' but unfortunately she can't sit up alone and I don't think I can hold her. We do love the shows though. Festival of the Lion King in AK is a big fave - our first year they pulled her out and pushed her around during the "Lion Sleeps Tonight"(I, of course,was bawling in the audience - Love the Disney magic!)

Thanks for the tip about plugging the vent in at restaurants- hadn't thought of that one! And, BTW, I've gotten through half of your TR and I must say you and your family are quite inspirational! It's so helpful to a family like mine to read about others overcoming their challenges and just doing what they want to do! You're all incredible and thanks for sharing your story - it has helped to give me the confidence boost I needed!

 

[jennydep]

You leave tomorrow! I bet you are so excited!!! You will have the time of your lives for the next 7 days! Enjoy the magic!!

 

[SueM in MN]

I was gone when you left, so hope you had a good time (assuming you are reading this after you get back).

 

[patticake3]

Camster, I am thinking of you and hope you are having a fabulous WISH trip!!! I haven't checked in lately because my home computer crashed - I'm sorry to hear your daughter was in the hospital. Hope she's feeling much better and enjoying every second of Disney! That is definitely a happy place to be, especially after a hospital visit! Sending lots of positive vibes to you and your family! Of course, you're in Disney and not reading this, but my happy vibes are still flying your way!
-Patti

 

[Camster0307]

Hi everyone! We're back and, as usual, had a magical time!

Yes, Amanda required her vent for most of the time, but as the week went on, she was feeling stronger and I was able to take her off a few hours at a time. The big thing for me was getting on Dumbo - and WE DID IT! For the past nine years, that has been OUR ride and I'm happy to say we got on it, along with the oxygen tank, suction, and ambu bag. Piece of cake! We also managed to do Aladdin;IASW;Buzz;Pooh and many, many shows. My daughter just loves the Xmas decorations, so it was such a treat to be there at this time of year.

I have to add that the Delta flight out of Boston went smoothly - the flight crew could not have been nicer or more helpful. The flight out of Orlando was a different story. They were running behind schedule and would not let me pre-board. They put 1st class on first; then said I could go on before the other coach passengers. I hadn't even gotten my daughter out of her wheelchair yet when I see them allowing more passengers down the jet way to board. I almost freaked out. I'm trying to explain to the flight attendant that I need to disconnect my child from her vent and oxygen and then get her to her seat ASAP and re-connected again; NO ONE can be blocking the aisles! She apologizes but explains that they're worried about their on-time status and that the FAA will fine them if they're late so they need to start boarding everybody now. Can you believe that? I looked at her and just said "are you kidding me? Do you KNOW the purpose of a ventilator? We're going to be dealing with a much bigger problem here is she's disconnected for too long". She told me fine - but I need to hurry. I'm telling you, Delta used to be the only airline I flew, but after this, I'm going to check out other airlines for future trips.

With that one exception, everything went really well. I feel quite the sense of accomplishment and now feel even more confident for the next time!

 

[SueM in MN]

glad to hear you had a good time.
sorry about the airline though. they have done that to us too. we don't have as much equipment as you have to deal with, but still need to get DD unstrapped and then take the wheelchair apart. when I tell them we need to preboard, I make it clear that I will be blocking access and that the more stressed I feel from other people crowding on, the more difficult and time consuming it will be. the best are the airlines that let us board with the First Class or right before. in your case, it sounds like the airline decided their limited time was better spent on their first class passengers than on you.
bad choice on their part!

 

[eternaldisneyfan]

Yay! I am so glad that you had a good time at Disney!!

 

[alizesmom]

Hooray for a magical trip. Now you've given me the courage to do Dumbo. Karen

 

[patticake3]

Camster, I'm so glad you had a magical trip!!! And how great that you rode Dumbo! I'm sure it was a memory that will stay with all of you! Sorry the airline wasn't accomodating on the way back; that is just ridiculous! Hope your daughter is getting stronger every day. Did you end up going to GKTW? Just curious how that all worked out for you. Welcome back!

 

[LindaBabe]

And Camster, I would SO be addressing the issue with Delta in a politely but strongly worded letter!

 

[dclfun]

I'm so glad you had a great time! I had the same issue with TED leaving ORD to MCO. They decided to let everyone board BEFORE me even though I had told them that I knew that I had the right to preboard. Thankfully the stewardesses were wonderful and I had the same crew outbound that I did inbound ( and of course they remembered me) so they did all they could to help me including giving me the entire row, placing my vent in the seat next to mine and strapping it in for me and making sure my service dog was also comfortable, plus profuse apologies. If you read about all the airline passenger "bill of rights" legislation that's pending I hope this doesn't mean that our safety and dignity is compromised by the airlines who aren't wanting to pay fines for being late. Whatever happened to "arrive alive"? ---Kathy

 

[Camster0307]

I definitely will be writing a letter to Delta. I'm really fed up with that airline: they "lost" our luggage two years ago; have gotten rid of many of their nonstop flights out of Boston; refused to give me a refund for my daughter's ticket last year when she wound up in ICU in respiratory failure and couldn't make the trip to Disney; and now this. Don't know if it will do any good, but it will make me feel better to get it off my chest.

Patticake3: We never really went in to GKTW; we stopped by on the way to our resort to pick up our passes. I don't think they were too happy with us. They wanted us all to get out and stay for a 45-minute orientation. Now, mind you, it's 1pm and we had been travelling since 5am; Amanda's vent was plugged in to the van and I just wanted to get settled at our room. I really didn't understand why an orientation was necessary - we weren't staying there and had no plans to use the facilities. I didn't even had a car for the week. Anyway, we did get out of there within 20 minutes; and they did give Amanda a very generous goody bag full of fun things.

Thought I would post of pic of Amanda & I enjoying our favorite ride:

 

[SueM in MN]

nice pics!