Travel versions of medical equipment
May 9, 2016 7:49 AM Subscribe
We are taking a long-deferred trip to visit family on the other side of the globe for 10 days. Yay! However, we have a little one who gets very ill from garden-variety colds (the kind that live on airplanes). At home we have accumulated several pieces of medical equipment that help us keep her out of the hospital. I'm working on the contingency planning for our trip, and wondering about things like travel nebulizers, use of nebulizers on airplanes, and small portable suction that can do better than a Nosefrida. Lung-impaired travelers (or the family thereof), please share your insight.
So, right up front: Please don't second-guess our decision to take this trip. It hasn't been arrived at lightly. This Ask is about figuring out what options are available to us so we can optimize contingency planning. Contingency plan 1 is for while we're staying at Relative's house; contingency plan 2 is for on the plane if we need to fly her home while she's sick.
Nanopanda is 2 and has reactive airway disease but also has structural airway defects that keep her from clearing her lungs effectively. As a bonus, the structural problems are exacerbated by the bronchodilators for the reactive airway disease. So, we have a very carefully calibrated management regime. At home, when she's sick, her airway management consists of: nebulizer treatment with combined atrovent/albuterol, inhaled steroids, nasal steroids, nasal suctioning, chest pounding, and often oral steroids. I spot check her oxygen levels with a pulse oximeter as needed to minimize trips to the doctor's office.
For the upcoming trip, I am trying to figure out exactly what equipment to bring. Of course we will bring a giant bottle of oral steroids (her physicians are comfortable with letting me make a judgment call as to when to use them). I got a small pediatric fingertip clip pulse oximeter that I've practiced with and am comfortable bringing instead of the hospital grade one. I'm trying to figure out what to do about suction and nebulizer.
Suction: Our suction machine is bulky and takes up half a carryon suitcase. Plus, it got thrown out of whack the last time we traveled with it. I haven't gotten acceptable upper airway clearance with the Nosefrida. Are any of the battery powered baby nasal aspirators decent quality? Stronger than you can get with Nosefrida? I know it won't compete with hospital grade, but I'd settle for better than Nosefrida.
Nebulizer: Our nebulizer isn't huge (6"x6"x4") but it's still kind of a brick and again I'm worried about it being damaged in transit. So, do I want to get a travel nebulizer? Any specific recommendations? If I get a battery powered one, would we be allowed to use it on the airplane? Anyone have experience with using a nebulizer on an airplane? We could, in theory, go without it for the duration of the flight - if we absolutely had to - but all things being equal it would be nice to have the option. (Nanopanda is prescribed lots of physical activity to help keep her lungs clear, and if she's sick, a 14 hour plane ride would be a long time to be still and not have medicine. If nebulizer is absolutely not an option we will use inhalers as a backup but they don't work nearly as well for her.)
Assume that we have learned a LOT about our baby and her conditions since last winter, and we will not fly with her if it seems dangerous. But assume also that we are thinking through a lot of scenarios right now and trying to plan for the safest possible trip. Maybe she won't even get sick and we won't need any of this! She's a totally normal kid when she's healthy. Your help with the contingency planning is greatly appreciated. If you have cautionary tales that come with concrete lessons learned, please feel free to share those as well, but don't go out of your way to be apocalyptic. I promise, I have the worry angle covered!
So, right up front: Please don't second-guess our decision to take this trip. It hasn't been arrived at lightly. This Ask is about figuring out what options are available to us so we can optimize contingency planning. Contingency plan 1 is for while we're staying at Relative's house; contingency plan 2 is for on the plane if we need to fly her home while she's sick.
Nanopanda is 2 and has reactive airway disease but also has structural airway defects that keep her from clearing her lungs effectively. As a bonus, the structural problems are exacerbated by the bronchodilators for the reactive airway disease. So, we have a very carefully calibrated management regime. At home, when she's sick, her airway management consists of: nebulizer treatment with combined atrovent/albuterol, inhaled steroids, nasal steroids, nasal suctioning, chest pounding, and often oral steroids. I spot check her oxygen levels with a pulse oximeter as needed to minimize trips to the doctor's office.
For the upcoming trip, I am trying to figure out exactly what equipment to bring. Of course we will bring a giant bottle of oral steroids (her physicians are comfortable with letting me make a judgment call as to when to use them). I got a small pediatric fingertip clip pulse oximeter that I've practiced with and am comfortable bringing instead of the hospital grade one. I'm trying to figure out what to do about suction and nebulizer.
Suction: Our suction machine is bulky and takes up half a carryon suitcase. Plus, it got thrown out of whack the last time we traveled with it. I haven't gotten acceptable upper airway clearance with the Nosefrida. Are any of the battery powered baby nasal aspirators decent quality? Stronger than you can get with Nosefrida? I know it won't compete with hospital grade, but I'd settle for better than Nosefrida.
Nebulizer: Our nebulizer isn't huge (6"x6"x4") but it's still kind of a brick and again I'm worried about it being damaged in transit. So, do I want to get a travel nebulizer? Any specific recommendations? If I get a battery powered one, would we be allowed to use it on the airplane? Anyone have experience with using a nebulizer on an airplane? We could, in theory, go without it for the duration of the flight - if we absolutely had to - but all things being equal it would be nice to have the option. (Nanopanda is prescribed lots of physical activity to help keep her lungs clear, and if she's sick, a 14 hour plane ride would be a long time to be still and not have medicine. If nebulizer is absolutely not an option we will use inhalers as a backup but they don't work nearly as well for her.)
Assume that we have learned a LOT about our baby and her conditions since last winter, and we will not fly with her if it seems dangerous. But assume also that we are thinking through a lot of scenarios right now and trying to plan for the safest possible trip. Maybe she won't even get sick and we won't need any of this! She's a totally normal kid when she's healthy. Your help with the contingency planning is greatly appreciated. If you have cautionary tales that come with concrete lessons learned, please feel free to share those as well, but don't go out of your way to be apocalyptic. I promise, I have the worry angle covered!
This was us with our immuno compromised kid for years. I became hyper vigilant with baby wipes and alcohol hand gels. Absolutely everything we touched we wiped and before anything went near our mouths or near something that might go near our mouths, it was wiped. We were extremely vigilant about buttons, railings, knobs, handles etc in public. And glasses or cans that people might touch with their hands. Think of people's hands as drunken snot filled germ decorators and you'll get the idea. Use knuckles to press lift buttons/call buttons anything public. Paper towels for bathroom taps and doors. And keep yourselves healthy too as you're a potential security breach for her health too. We often forgot to make sure we didn't get sick in the early days.
Does your little one definitely need a nebuliser? Will a mask with an inhaler not cut it? If an inhaler with the mask attachment wasn't working for us, we went straight to hospital anyway.
I'm on a smashed up iPhone in the middle of the night at the moment but if I can think of more I'll write again.
(Congratulations on getting this far. Sadly, I know your challenges far too well and few others will ever understand the tension of trying to keep a baby that is perfectly well when they are perfectly well, perfectly well but who is critically ill when they are not perfectly well. You're not imagining it, it's exhausting.)
posted by taff at 8:04 AM on May 9, 2016
Does your little one definitely need a nebuliser? Will a mask with an inhaler not cut it? If an inhaler with the mask attachment wasn't working for us, we went straight to hospital anyway.
I'm on a smashed up iPhone in the middle of the night at the moment but if I can think of more I'll write again.
(Congratulations on getting this far. Sadly, I know your challenges far too well and few others will ever understand the tension of trying to keep a baby that is perfectly well when they are perfectly well, perfectly well but who is critically ill when they are not perfectly well. You're not imagining it, it's exhausting.)
posted by taff at 8:04 AM on May 9, 2016
If you haven't already, try the cystic fibrosis parent groups as they would have similar concerns. The CF national group's traveling with CF site doesn't get into specific models but does have a variety of other possibly useful info. And the CF parenting boards may well have specific recommendations and resources. Hope everyone has a great time!
posted by beaning at 9:26 AM on May 9, 2016
posted by beaning at 9:26 AM on May 9, 2016
IANYD, IANAD, but I am have some experience with what you speak of...
Your airline will have a 'medical desk' who can help you determine which equipment (battery powered stuff) is approved for use in flight. The equipment manufacturer can also help you with 'compliance letters', for the equipment you choose. Be aware that the medical desk may then ask for 'fit to fly' letters from pediatrician, etc. The upside is they can be very helpful arranging help through security, avoiding dumb question from crew, etc. This is good because large batteries in things like nebulizers can look on Xray like the B-word which will not be spoken at airports (ask me how I know this....)
You can absolutely use a nebuliser on the plane, just don't count on the aircraft power. You will get funny looks, and maybe some questions from folks. If 'dry'nose/upper airways secretions are a problem for NP, be aware the relative humidity on planes is LOW! So anticipate crusty nose/dry crusty upper airway secretions may suddenly be extra dry and crusty. Ask your doc about nebulising saline once in a while to keep the airway nice and moist in the equivalent of the Sahara Desert of airplanes, especially on a multi hour flight.
There are a range of smaller suction units available (I'm not sure what you are using) which are battery powered. DO NOT count on aircraft power being available, although it often is. I have dragged a portable suction around without busting it, so there are small, tough units out there. There is also a thing called a Vvac which is a manual EMS suction. It can generate quite strong suction and you can get a suction catheter attachment for it which would allow it to be used for nose/upper airway (it's not meant for 'deep' suction. It might be a suitable backup for you, and is light and rugged. Obviously, you need to talk to your RT/doc to see if this is suitable for Nanopanda and don't make the first time you use it be on the plane. But it is more 'suctioney' than a nosefreida.
As I am sure you are aware, everyones oxygen saturations drop in the air, sometimes quite substantially, depending on the 'cabin altitude' of the flight. I'm sure you have a sense of NP's 'normal'. Something to ask your doc about is planning to have oxygen available on the flights for NP. Airlines typically have oxygen on longer flights for emergency use, but using it triggers things like emergency landings and drama. Most airlines, with physician approval, can arrange to have low flow oxygen/and or an oxygen concentrator (battery powered) specifically available for you (even with a child mask/prongs). Be aware this is not free service, but could be useful if NP might need it for a safe/comfortable flight home, if they are under the weather, but otherwise safe to fly.
Have a great trip!
posted by Northbysomewhatcrazy at 10:28 AM on May 9, 2016
Your airline will have a 'medical desk' who can help you determine which equipment (battery powered stuff) is approved for use in flight. The equipment manufacturer can also help you with 'compliance letters', for the equipment you choose. Be aware that the medical desk may then ask for 'fit to fly' letters from pediatrician, etc. The upside is they can be very helpful arranging help through security, avoiding dumb question from crew, etc. This is good because large batteries in things like nebulizers can look on Xray like the B-word which will not be spoken at airports (ask me how I know this....)
You can absolutely use a nebuliser on the plane, just don't count on the aircraft power. You will get funny looks, and maybe some questions from folks. If 'dry'nose/upper airways secretions are a problem for NP, be aware the relative humidity on planes is LOW! So anticipate crusty nose/dry crusty upper airway secretions may suddenly be extra dry and crusty. Ask your doc about nebulising saline once in a while to keep the airway nice and moist in the equivalent of the Sahara Desert of airplanes, especially on a multi hour flight.
There are a range of smaller suction units available (I'm not sure what you are using) which are battery powered. DO NOT count on aircraft power being available, although it often is. I have dragged a portable suction around without busting it, so there are small, tough units out there. There is also a thing called a Vvac which is a manual EMS suction. It can generate quite strong suction and you can get a suction catheter attachment for it which would allow it to be used for nose/upper airway (it's not meant for 'deep' suction. It might be a suitable backup for you, and is light and rugged. Obviously, you need to talk to your RT/doc to see if this is suitable for Nanopanda and don't make the first time you use it be on the plane. But it is more 'suctioney' than a nosefreida.
As I am sure you are aware, everyones oxygen saturations drop in the air, sometimes quite substantially, depending on the 'cabin altitude' of the flight. I'm sure you have a sense of NP's 'normal'. Something to ask your doc about is planning to have oxygen available on the flights for NP. Airlines typically have oxygen on longer flights for emergency use, but using it triggers things like emergency landings and drama. Most airlines, with physician approval, can arrange to have low flow oxygen/and or an oxygen concentrator (battery powered) specifically available for you (even with a child mask/prongs). Be aware this is not free service, but could be useful if NP might need it for a safe/comfortable flight home, if they are under the weather, but otherwise safe to fly.
Have a great trip!
posted by Northbysomewhatcrazy at 10:28 AM on May 9, 2016
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