View Full Version : looking for answers...

01-21-2010, 09:49 AM
I've been registered her for quite some time but never posted. I have a 5 year old girl (6 in March) diagnosed with Congenital Fiber Type Disproportion. She has a trach and g-tube. We live in Maryland....my cousin in law is getting married in August. They live in Colorado. Of course everyone thinks it is so easy for us to just hop on a plane and go. Meanwhile I am totally stressed and terrified of taking my daughter that far away. The farthest we've had her is 8 hours away in North Carolina. So long story short..... I was just looking for others who may have traveled by plane. Also was wondering how the change in altitude may affect her. And lastly, how did you handle getting supplies and equipment to whereever you may have gone. Right now for her I have- portable suction, feeding pump, pulse ox, compressor, and a concentrator. She only uses the humidity at night and the concentrator is here as needed. It is very sporadic. We never use it doing the day and the last time it was used at night was about 2 weeks ago for an hour. Thanks in advance for anything you have to offer.

01-21-2010, 11:30 AM
We recently (3 weeks ago) flew from Detroit to Florida for a wedding.

It was not easy, but certainly doable.

We packed about twice as many supplies as we thought we'd need and carried them and the vent and other equipment on the plane (though it may be better to ship some of them the week before you go).

We acquired a portable oxygen concentrator - this is all most airlines allow these days, and they're not horrible to rent (I think ~$300-$400 a week). Your DME may be able to get you one, depending on how useful they are.

We made arrangements with the hotel for a room with a fridge. We rented a car that we knew would fit us, the equipment, and the car seat. We made sure to know where the nearest children's hospital was (although when we thought we were going to have to take Alexander to the hospital, we didn't actually know where it was, and since we couldn't get his trach in, 911 was looking like a good option).

The airline told us we needed a letter from our doctor (they have a long list of what it needs to say), but no one ever asked for it. I'm guessing if we'd been using the ventilator, they might have asked - when we started planning the trip, he was on the vent 24/7; by the time we got there, he was only on 2-3 hours at night, and our last night there he actually slept all night without because we were all exhausted.

We didn't have any issues with humidity on the plane, though I'd guess it depends on how sensitive your child is - Alexander is super wet with just a trach nose, so we weren't worried. We *did* bump his O2 up a bit on the plane - we were running 1/2 a liter normally, and we went to 1 liter.

It was *absolutely* a difficult trip - from Friday at 6 am to Monday at 11 pm, we had no breaks, and Alexander managed to decannulate himself in the middle of the night the first night. But it *was* manageable. I've posted more about the whole experience on my blog (http://ourlittleacorn.blogspot.com/2010/01/traveling-with-your-own-portable-field.html) The family has a much clearer idea of how things really work at our house and how much is involved, and for that I'm thankful. Alexander had a fabulous time. I'm not sure we'll do it again anytime soon, but it's good to know that we *can* do this if need be.

01-21-2010, 03:48 PM
Thank you. I called airlines today to get an idea of what to expect. It looks like we would have to rent a portable concentrator as well. I'm going to read your blog cause I have a few questions but they may be answered there. Im sure the trip can be made, Im just thinking of all the work that has to be done by me. It seems very overwhelming. And no nursing support for an entire week isn't one of the highlights either. It would be easier just not to go. But as I have been asked to be in the wedding and both of my girls are flowergirls in the wedding its hard to back out of.

01-21-2010, 07:10 PM
I flew a couple of times by myself with Parker when he was trached. He never had a vent so it was easier. But, one thing that was really helpful for us . . . I introduced myself and Parker to the stewardesses. Explained the trach and how loud suctioning was going to be. When I did have to suction the first time on the plane I warned the people right near me so they wouldn't jump out of their skin. Everyone was great.

01-21-2010, 10:14 PM
We just flew cross country from AZ to NJ a few months ago. We called our DME and they have a person specifically for travel. We had the compressor delivered to the hotel and I had the script for O2 forwarded to the branch in NJ. I had a small duffel bag that fit all of her equipment ie pulse-ox/probes. I carried them on the plane.

She did fine with the altitude, but you can get O2 on the airline as well.

01-22-2010, 08:27 PM
We just traveled PA to FL via plane with lots of equipment (2 medically fragile kids, 1 with trach). Security was easy and the airline preboarded us so we could get everything settled in. My daughter (trach) did have some issues with dryness both ways and desats while ascending. We did not have a portable concentrator and our airline does not provide oxygen. Anything irreplaceable we took on board with us (medical equipment does not count toward your carryon). We did ship some things (formula) ahead and had a local DME provide a concentrator, nebulizer, D tanks (anything we would not need while flying). I really felt we had very little trouble. We had 2 wheelchairs, 1 carseat, a vent, a BIPAP machine, 2 humidifiers, 2 Kangaroo Joeys, 2 oximeters, all of their meds and oral syringes and maybe a few things I have forgotten to mention. It is doable and worth it. :) Karen

03-29-2010, 04:21 PM
I think you can manage the supplies and trach issues for your daughter as the parents on the other posts have mentioned. The one issue that wasn't addressed yet that was of concern to you was the altitude. There are really two things to consider - how she will tolerate the 17% O2 during the flight (as opposed to 21% room air at home), and the altitude itself once you arrive in CO.

As for the flight, I would check with your pulmonary doc to see if any pulmonary function labs in your area do testing for this. There is a special test that can be done to trial her at 17% to see if she will need any/how much supplemental O2 during the flight .

As for the high altitude issue, this can be more tricky as there is no specific test for it. Does your daughter have any cardiac issues? If so, I would ask your cardiologist about the risk. For "normal" kids, high altitude sickness isn't usually a problem under 8,000 feet. However, depending on your child's specific issues, she could have symptoms much lower than that. My daughter's cardiologist has said no more travel anywhere above 2-3,000 feet above sea level because when we went to Santa Fe, NM a few years ago, she went into acute heart failure from the ~7000 foot altitude. Also, there is a medication (acetazolamide) that can be used to help prevent altitude problems (my daughter can't take it due to her sulfa allergy) that you could ask your doctor about. Depending on where you are going, it might be a good idea to contact Children's in Aurora, CO (near Denver), and ask them about your daughter. They have a strong pulmonary department, their website says they have experience in altitude sickness, and it probably wouldn't hurt to talk to someone there just in case you needed care while in CO.

Hope you are able to work everything out and that you have a great trip!