tube feeds?

[dieselmama]

I realize am way ahead of myself since our cruise is over a year away, but I need to start figuring things out so I have the right equipment! My special needs son is strictly tube fed and since this is a long trip (3 weeks away from home) we will need to be bringing a total of 9 cases of formula with us, plus several boxes of his canned baby food green beans as well (he is also on pedialyte, but we can do powdered as long as we have bottled water to mix that in).

 

We will be cruising to Alaska, one week up and one week back on Princess plus a land tour and a few extra days in Anchorage. We thought we might be able to ship some of his feeds ahead of time to Alaska just so we don't have quite as much to haul with us on board in Vancouver, but weren't sure about the safety of doing so and the potential of having it "disappear" on us and not having his feeds available when we need them. Any thoughts on that? Each case is 9x12x6, so they aren't small by any means...

 

The last time we cruised was in 2008 with Disney, and our homecare agency shipped his TPN (IV nutrition as he was dependent on it) to our hotel at the time before we shipped out so we could hand carry, but that was only for a week long trip. 3 weeks is a lot more to lug on board... AND a lot more to lug in the car as we drive from Idaho along with his scooter! Plus we have his bipap and O2 concentrator to bring on board with us... we might need a hand truck if we have to hand carry the formula to! ;)

 

Open to suggestions and ideas!

 

Heidi

[MommaBear55]

I would recommend contacting the special needs department of the ship to see if you could have it shipped directly to them. It is slightly more difficult as it would be going to Canada. The other idea would be to carry what you need for the first part and ship the second half to your hotel in Anchorage. Or, if your medical supplier has an office in Anchorage, have it shipped to them. Does he need special water for his bipap? You might be able to arrange to get that through the special needs department. Do you have medical insurance in case he gets sick during the trip? Do you have declogger for the tube? Do you have or need a handicapped accessible stateroom?

 

Enjoy your trip. Alaska is amazing

[dieselmama]

Good ideas, thank you! And yes, we do have an HA stateroom... Distilled water will work for the Bipap, I know DCL provided it for us when we cruised with them. I should probably just make a list of all of this and get our TA to work on it for me, but I am one of those anal types that like to know everything up front and deal with as much as possible myself. I have been doing that for all 19 years of my son's life, and its hard to let someone else do it for me!

 

I will contact the homecare agency though, the TPN agency would do it for sure, I just don't know if the enteral agency would as they are new to us. Sigh...

 

 

Heidi

[martincath]

I assume the cases do have individual smaller packs inside - if so then the large fixed price Priority Mail box from USPS would be both a reliable and a frugal way to send them (the size you indicate is very slightly over one interior dimension of 5.5", but if they separate into smaller units you could perhaps get a pack-and-a-half in one box).

 

Anything that fits inside to a max of 70lbs costs only $18.75 to ship anywhere in the US in 1-3 days, includes free tracking, and is also automatically valid for Hold for Pickup service at no extra charge - so if you send it just before leaving home it can hang around in Anchorage at the post office waiting for you to collect it.

[dieselmama]

Oh, that is a good idea if we can't get the homecare to send it. They are related to Walgreens, so my hope is that they could have it held at a Walgreens location in Anchorage for us. And yes, they do separate into juice box sized containers... might be worth using the large USPS boxes to pack them in for taking with us on the ship too, easier than several of the smaller cases if we can fit more than one case in a box. Those are sturdier boxes than the cases they are packaged in too. I would like to think we could pack them in some way to hand them over when we check in instead of having to hand carry them on when we check in since we would probably be taking the first 2 weeks worth with us and shipping the third week... thats 6 cases. (13 lbs per case). My son doesnt travel light. LOL!

 

Heidi

[katisdale]

Since you are sailing with Princess, you need to go into your cruise personalizer and fill out the portion to request distilled water. It is at no additional cost. Could you use that to mix the pedialyte? If yes then you wouldn't have to bring or buy bottled water.

[dieselmama]

I see no reason we couldn't use distilled water... we use a fair amount, a liter every 2 days for the pedialyte plus of course we need some for the bipap. Would they balk at that much? That would definitely help. We were going to ask if they would be willing to give us the water bottles free of charge since he won't be eating ANYTHING on the cruise at all. Literally nothing. (hasnt since he was 9 months old and he will be 20 yrs old on the trip... this is an early 21st birthday celebration).

 

I checked with our homecare and at least as of now they can ship to the hotel in Anchorage. We will keep in touch with them to make sure that is still the case closer to when we "ship out". Thank you all for your help!

[katisdale]

They have always given us a gallon of distilled water for a one week cruise.

[dieselmama]

Hmm. A gallon won't be quite enough when I add in all he uses for pedialyte and flushes AND the bipap. I will have the TA ask for 2 gallons and see if she can get them to do that for us. Thank you!