traveling with an oxygen dependent kid

i am certainly not telling you anything new with this statement but...
traveling with kids isn't the easiest thing ever.
people have written countless articles about how traveling with kids can be "easy!" and "fun!" and "tear proof!" clearly these people have never sat with two hungry three year olds on the tappan zee bridge in bumper to bumper traffic.
traveling with kids who have special medical needs?  well... i will say this.  IT. CAN. BE. DONE. (ooh, i just shouted that... like from the top of a mountain (because last year i thought it was a fallacy))

we've got one girl on continuous oxygen (but getting better at being off for periods of time here and there) and both girls with g-tubes and special formula.  one of our girls does not do very well at eating by mouth and needs to be fed over a pump (or bolus fed) on a very regular schedule.  they both have a significant amount of medications.
so, how do you do it?  plan, plan, plan... and start early.  i will say, especially if you have a kid on oxygen or another medical intervention, you can't exactly wake up in the morning and take off for another state on a whim.  
1) plan as far ahead as possible.  one of the best things you can be when the being the parent of a medically-complicated child is to be *organized.*
2) traveling with oxygen requires calling a travel center through your durable medical supplier (dme).  they will find the correct contacts with you and provide you with contracts to ensure that the proper amount of oxygen is delivered where you need it to be.  (don't think you can pack a whole bunch of oxygen tanks in the trunk and call it a day.  it's hazardous and subjecting them to vast temperature fluctuations is asking for a problem).
3) we find that the liquid oxygen tanks work best for us.  we have a travel container that we can refill from a bigger tank.  it allows us to have a large tank delivered to the hotel room and we can fill as many times as we need on it.
4) when packing, take anything you might need as far as accessories... this includes a regulator, connectors, "christmas trees" (those green pointy plastic connectors) and the correct size cannula.  on our recent trip to pennsylvania and new jersey our first hotel's tank was delivered with an adult cannula and a humidifier bottle for the wrong type of tank... the new jersey tank was delivered without a regulator altogether, no connectors and no other accessories.  we thankfully were able to fill off of the tank so we weren't completely lost, but that could have been a disaster. lesson learned on our end.

5) confirm, confirm, confirm.  you may annoy the customer service representative, but i'll give you a little scenario as to why you should.  when we got to our second hotel there was no oxygen tank as contracted... after numerous phone calls and headache my husband managed to find someone on the phone (it was a saturday and the message service simply told us they couldn't find anyone... great huh?)  we thankfully had filled the travel tank prior to our departure from the pennsylvania hotel and had enough to get us through a number of hours.  we went to the family function and got word that the tank was delivered to the hotel.  phew right?  not!  we get back and we're exhausted.  there is no regulator, there is no accessories... worse yet, we can't fill the tank that we have either because the dope that dropped it off didn't fill it correctly and it wasn't pressurized.  as i sat listening to my kid huffing and puffing and about one second from getting in the car to go to the nearest emergency room they finally show up with the tank... at 1:30am.  yes, you read that correctly.  
anyway we survived.  be organized, paranoid and somewhat annoying and you will have a great time.  :)