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

[patticake3]

Camster, definitely write that letter. We once had a problem with Continental (the last time we flew back from Disney, actually - in 2000) and they sent us Omaha steaks. That was totally strange, but it felt good getting my grievances off my chest, anyway.

Great picture, thanks for sharing! Glad everything worked out at GKTW for you just as a quick stop. Hope you guys are doing well!

 

[mechurchlady]

Definitely write the letter as it is an issue that needs to be addressed. Silence may mean another person getting treated badly.

I am so happy to see the photos and glad you had a good time.

 

[Joanna71985]

Love the pictures!

 

[Camster0307]

Thanks all for your encouragement and compliments. Thought I'd share another photo of Amanda - I was so proud of her; she did such a great job for a kid who had just been in intensive care the previous week. Disney truly is magical!

 

[dclfun]

I have that same vent and backpack... Good to see Amanda "flying high" on Dumbo! Thanks for the great pics. ---Kathy

 

[Camster0307]

I have that same vent and backpack... Good to see Amanda "flying high" on Dumbo! Thanks for the great pics. ---Kathy

Kathy - If you don't mind me asking ... since you have the vent as Amanda ... you just have it hang off the back of your chair, right? Amanda's pt had ordered a vent tray for us last year when we got the vent; I've never used it but looking at it, I don't really see how it would be used with this particuliar vent. Her pt was just looking for a way to lessen the weight hanging off the back of her chair - between the vent, suction, O2, & emergency bag - it's alot and I always wind up carrying something on my shoulder to avoid the chair tipping backwards.

Was wondering how others with the same setup manage.

 

[Joanna71985]

Awww, what a great picture with Minnie.

 

[Bugsmom73]

Great pictures!!

 

[dclfun]

For my vent attachments the vendor put a slide-in "bolt" ( not really a bolt but it attaches on the back of my chair and allows the vent to slide down and stay secure and then be removed if necessary ). I like this much better than just having the straps hanging as then it bangs around and doesn't feel secure. I have a feeding pump attached to the headrest but have been mostly using it at night and just not attaching it during the day/using bolus feeds for water and hydration, and then also the battery and ambu bag, etc. I know what you mean about equipment everywhere! I just had my vendor attach a larger vent battery plus I have the two lithium backup batteries attached with velcro and hooks to the vent itself. They made a battery tray that comes in much closer vs. "sticking out" and the larger battery now lasts up to 15 hours +. I wish I knew how to post a photo as I'd send one to show the attachment, but I think it's a standard attachment for the LTV's.---Kathy

 

[Camster0307]

Kathy - Thanks for the info. When you talk about a "larger" vent battery, do you mean the ones that look like a car battery? We had one of those for a little while until the lithium ones came in - they were pretty heavy. We were fortunate with this trip - I had two lithium batteries and my homecare co. had an extra one that they lent me - they each lasted 6 hours a piece. And by mid-week, I was able to take Amanda off the vent for a few hours during the day - she just needs it for pressure support.

But I do like to get as much info and feedback as I can. Her doctors feel there will come a day she will need the vent 24/7 - and not just when she's sick. I feel this trip was a good "practice" run for me. I was so nervous beforehand, worrying about how we were going to manage with all the equipment. I can honestly say it wasn't bad! I mean, it is what it is and we adjusted accordingly and did just fine. It was so helpful, though, to hear from others who had done it also. It gave me a much-needed confidence boost! I'm already looking into booking our next trip for Nov.08!

 

[SueM in MN]

For my vent attachments the vendor put a slide-in "bolt" ( not really a bolt but it attaches on the back of my chair and allows the vent to slide down and stay secure and then be removed if necessary

That sounds like a cotter pin. They are kind of like a bolt, but have a quick release mechanism.