After spending countless hours on the phone and Internet... our trip is booked!! Who knew it would require so much work to plan. I guess we've always just done it the "easy" way. Jump in the car and go!
I found a Portable Oxygen Concentrator and it's only $220 to rent for four days. A couple other places had them for over $400. Insane. I'm hoping our insurance will reimburse us since it's medically necessary to get us to the hospital. I'll deal with that later.
I purchased our airline tickets and got a pretty decent deal through Southwest. I am still a little iffy on the details of flying with his medications since they are compounded in jugs. He's on such high doses, you should see the bottle sizes of some of his meds. Much larger than the "FAA Approved" liquid. There's also the issue of taking his blended food on board in syringes. My blended creations often look a little sketch and so I'm trying to figure out how to handle that too.
I used Priceline for a rental car... can you say GREAT DEAL!?! I am more excited about my super deal for the car than anything else. I get excited about great deals.
We are staying at our favorite hotel, the one we always stay at. What's not to love about large rooms, comfy beds and free breakfast by the pool? It's impossible to get into the Ronald McDonald House, but I'll keep trying. We've never had any luck.
I appreciate you all telling me about Angel Flights. I will for sure look into that as soon as Owen is oxygen free. For some reason, there is an issue flying on the small planes with oxygen. There is something about the cabin pressure. I don't know.
We have been fortunate to have the resources available to us so that we have the ability to travel to Stanford. We have been stashing money into Owen's transplant account for a couple years now and have had some pretty amazing donations. I'm sure you've noticed the ads on the blog and the revenue from those go straight into Owen's account as well. We are so blessed to have this opportunity to get the care that we feel is best for Owen.
In two weeks, we'll be jumping on a plane. If anyone has tips for flying with toddlers, oxygen, medicine, anything... let me know! I haven't been on a plane in over 11 years and never with a little one, let alone a little one with tons of equipment.
13 comments:
Contact Southwest tell them Owen story. Southwest always beens good at providing a helper to help you through the airport to board etc.
Also tell Southwest about Owen medical needs. They will make the necessary aggrangements.
Southwest always has made those arrangements for us when travel with our critcally ill son.
For Owen bring distractions.
Oh, the very best of luck, sweetie!
Cxx
You are amazing! I can't imagine trying to plan all that and then having to worry about all the medically necessary stuff you have to travel with. It didn't even cross my mind that security might have an issue with meds and food...ughhh.
Anyway...you all remain in my thoughts and prayers.
I just wanted to say thank you for sharing Owen's story for my blog event.
Praying for Owen!
Any large bottles of medications, should have a prescription on them -- if they don't ask Owen's doctor to write a note to take with you. Same thing with his foods...just have a note from the doctor. You will need a copy of his birth certificate though, they probably didn't tell you that -- but don't forget it, or you will have problems getting past security. My 6 week old grandson was also denied passage, as my daughter was never told she needed his birth certificate!
Bring a Portable DVD player (or laptop) and snacks. Maybe coloring book and crayons. And of course the favorite blanket or snuggly. That and lots of patience. It's been a year since I have been on a plane with kiddos and they both slept for all but one hour of the last plane ride we were on.
The only other thing I suggest is changing his diaper right before you board, and then right after you are off. Airplane bathrooms are impossible.
Glad things are falling into place. Praying that all goes well with the trip and with everything at Stanford.
Have the doctor write you up a note to cover the medications and the blended food syringes. As long as you have the note, you should be okay. You can pack the blended food in a softsided cooler with ice packs.
You can also buy a travel blender, they work great!
Call the airline ahead of time, and find out exactly what documentation is required to enable you to carry the meds and blended foods on board. I am sure your doctor can provide any and all necessary paperwork for them.
Bring a backpack as your carry on! You can pack a small soft sided cooler bag in there too. It will free up your hands for carrying Owen, or any medical equipment. You should be able to board first, and have someone at the airport assist you with your medical stuff. Good luck! Be sure to fill us in on all the details as we have a similar flight coming up for us soon and could use all the tips!
Were you able to get business or first class? I was just thinking it might give you a little more room for all the "stuff."
I hope your trip goes well and everyone enjoys the plan ride! :)
Girl...we totally need to talk. I'm a frequent flyer with Isaac...the O2, the feeding pump, stashes of meds, milk....getting everything swabbed in security, putting the o2 tank through the metal detector, them making you close the stroller and put in on the belt while holding your child that's connected to the o2 and the feeding pump.
yep..i'm emailing you my phone number now.
As stressful as it is to just get through the airport...once you're on...you're good.
I'm glad that you were able to find awesome deals! (that always makes everything easier!)
It sounds like Kathy has you covered on tips, but get a letter from Stock. I emailed them a copy of CHOP's letter to the airline when we returned from Philly and asked them to essentially copy it, with updated info of course. Simply have them bulletpoint all items you need for Owen - POC, medications, syringes, liquified foods, etc. Southwest is very easy. FYI: They would not allow us to sit bulkhead with the POC.
If you have any doubts or questions, call SW reps before you leave. Also, check out the TSA's website re traveling with special needs children:
http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1572.shtm
Yes, bring the birth cert - very important. Usually, they won't ask for it, but you never know.
We'll be in the same boat...Hey, you guys fly out on the 9th right? SW? What time? We'll be there too with Zoe heading to Philly!
I've been reading for a while, but not sure if I've ever commented. Good luck on the trip and we're praying for Owen!
~Shannon
Post a Comment