Flying and BPD/O2

Excitedtostart

Hi everyone. 

I've never intro'd over here (I don't think, excuse my brain lapse if I have). My short story: After IVF and an uneventful pregnancy, I went into PTL at 23 weeks. Mag and hospital bed rest got me to 24w, at which point I went into flash pulmonary edema and had to stop the mag. My boys were born the next morning; Will weighed 1 lb 4 oz, Dan weighing 1 lb 8 oz. Will lived for 17 days, Dan is now 6 months, 2 months adjusted. He had a PDA repair, ROP with laser surgery, has BPDb treated with O2 and diuretics. 

His pulmonologist thinks he'll be off of O2 in a month - he's currently on 12 cc/min - and we've begun weaning. In 6 weeks we're going on vacation with him, a 12 hour flight. We have the OK from everyone to go and fly and have fun (NICU, Pedi, specialists), but are trying to figure out flying with oxygen. His pulmon isn't sure he'll need it in flight, and she's considering having us go without it at all. Or we'll bring a POC (concentrator) on the flight with us and he'll use that. 

Has anyone flown with their preemie in a similar situation? Used a POC on board? 

TIA! 

LnR70707

No advice, but I just wanted to welcome you to the board!!

DrRx

Welcome to the board!  My daughter has BPD and came home with oxygen.  We completely weaned off in July, but we were traveling in September to see family.  One thing you need to do is check with your airline.  Some allow you to bring oxygen or oxygen concentrators on (with medical clearance, letters from physicians, etc) but others just don't.   Definitely check with the airline now and see if your son will need oxygen, what needs to happen and if it is even possible/allowed on the plane. 

 

Excitedtostart

In case anyone searches this thread, an update on flying with infants and oxygen. This will be very long and boring if you don't need O2 on a plane, but if you do this will be really helpful. 

From what I've found, no airline will allow you to bring actual tanks on board anymore, unless you're on a medical flight. Instead you may use a POC, personal oxygen concentrator. There are a bunch of models on the market approved by the TSA and airlines, but only two models are approved for children. This is the model that seems to be most frequently used/widely accepted: 

https://www.sequal.com/medical.php

However, the lowest concentration that this machine will go to is 0.5 LPM. My son is currently on 12 cc/min, so a 500 cc/min jump might be a little much. Then I found this adapter: 

https://www.aeromedic.com/children-flying-with-oxygen

This adapter will reduce the oxygen down to 1/16th of a liter, so for those of you who may need smaller oxygen concentrations this may be helpful. They gave me a quote of $75 for the week, but roughly $60-75 for shipping and insurance costs (they Fed Ex it to you). Skip was the rep I spoke to and he was absolutely fabulous. 

The adapter needs 2 LPM to work, and that will cut into your battery time. At 0.5 LPM the SeQual will run for 3.5 hours on a battery. At 2 LPM it will run for about 2 hours. Keep this in mind when you plan your battery usage. 

Our insurance will cover the cost of tanks OR a POC. Since we have tanks in the house, we are OOP for the POC. Our supply company quoted us $87 for the week we will be gone. We asked for it to arrive two days before our scheduled flight, and they're not charging us for that which is awesome. 

The extra batteries we'll need are $50/battery. This is where it gets expensive. Luckily we can recharge everything when we get there so we can use the same batteries for our return flight. 

Some other things we'll need: 

Battery life for the duration of flight, plus 50%. If you need the concentrator while you're hanging in the airport, it will be that time as well plus 50% of that time. So 4 hours at the airport, 6 hour flight = 10 hours of battery life, plus 50% means you have to bring 15 hours of battery life. The battery for the SeQual will hold a 5 hour charge for adult mode, but only 3.5 hours for pediatric use (2 hours when running at 2 LPM). Batteries need to be packaged and labeled with run time, and they can't touch one another; basically, they all need to be in some sort of bag or plastic packaging so the sensors don't touch one another. 

They suggested that I print out the users manual and bring it with me, highlighting what the battery times are and that this is acceptable for infant use. 

A Rx from his Dr stating that he is in good health, fit for travel, requires the use of oxygen on board, what rate of oxygen duration (1/16th, 1/8th, etc) and for what duration of the flight. Even though my son is on a smaller rate of oxygen, we're having the Rx written for what the machine will be set to so that there's no confusion. I was told by another preemie mom that their Rx was specifically written for the name brand and model of the POC that they would be using to further emphasize the point. 

The rep that I spoke to suggested talking with our pulmonologist about blow-by O2 during flight. If we run the SeQual at 0.5 LPM and keep the cannula taped to his chin pointing up, or his forehead pointing down, we can run it at the higher volume and it should work out to what he needs. Better battery time and no need for the adapter. He's obviously not a Dr so he strongly encouraged me to talk to my Drs (which we will) and if we chose to do this, have the Rxs written explicitly describing blow by O2. 

My Dr is writing Rxs specifically for our outbound flight, and again for our return flight because she doesn't want us getting stuck somewhere.

She's also writing a Rx stating that D is wheelchair dependent because of his disability and that his stroller is his w/c. Now, he's clearly not walking yet, so of course he's stroller dependent. But with the Rx we can say that his stroller is his w/c and be able to use it where strollers aren't allowed - shouldn't be an issue at the airport, but while we're on vacation we may run into this. 

All babies will need a boarding pass for the flight, so we did that while I was on the phone. They put in the comments the make and model of the SeQual and that he would be using it for the duration of the flight. This way I'm not just showing up with it. 

You'll need to call back within 48 hours of the flight and confirm all of the information. There was some discussion of having the Rxs faxed to their office, but the agent wasn't sure if that would be helpful. 

We have to check in 90 minutes before the normal check in period and cannot check in online. Since the airline suggests checking in 2 hours before your flight, this means we will check in 3.5 hours prior to flight time.

This doesn't apply to us anymore, but if you're traveling with more than one child on oxygen, you need to be in two different rows. This is because the oxygen masks that drop from the ceiling. There's only one extra per X number of seats. I think this applies to all infants, but I don't know. 

Of note, the airline I contacted was very kind and helpful, but not very aware of oxygen on board. I had to speak to several supervisors to get the right information. So make sure you speak to supervisor and get their name. 

Not related to oxygen, but our biggest concern is infection and exposure to germs. We've reviewed our travel plans with out pediatrician, NICU Drs, NPs and RNs, pulmonologist and cardiologist. Everyone has said they think it's fine for us to go, provided he doesn't get sick before we leave, and with the knowledge that by putting him on a plane we're increasing his risk of getting sick. Having said that, every one of them has encouraged us to take this trip with D. 

Some things we're going to do to minimize the risks: No one touches the baby. Keep a blanket over the stroller until the last possible moment. I'm bringing a wrap, a sling and an Ergo to wear him in flight (or pass him to Mr ETS or my parents) and try to reduce the risk of him licking the fold down tray or people touching him. At the advice of our Drs were swabbing the inside of his nostrils with bactroban (an antibiotic ointment) every 4 hours. I'm bringing sterile pipettes with me to instill some freshly squeezed breast milk up his nose every 2 hours. He's mostly formula fed, but I'll be nursing him as much as possible and feeding him pumped BM in the days leading up to the flight, and I'm bringing frozen BM on the flight to feed him. I'll bring formula too, but BM more for immunities than anything else. 

https://www.hydroponics.net/i/138144

The pipette company. They were cheap and individually and sterile packaged. I'm pretty sure I'm on some watchdog list by ordering from them, but what the heck. 

I don't work for any of these companies, but I've had to do a lot of googling to try and figure this out and no one is really sure what will work or how to do it. So I thought I'd share what I've learned so far. I'll update with more information after my trip. I hope this helps someone else, we're excited about our vacation and want things to go as smoothly as possible.