Tuesday, March 8, 2011

Maybe not stuck after all?

In the last few weeks, I have been looking into holiday options that didn't involve flying. I had the brilliant idea of booking a cruise back to Australia and then cruising back to Hong Kong, hence taking the risk of flying out of the equation. However on discussion with Bernard, we came to the conclusion that it just wasn't a viable option, we'd have to be out of Hong Kong for five months since there are no regular cruises between HK and Sydney - and it is just too long for Bernard to be out of the office.

On Saturday, I was feeling pretty disappointed about all that - and since I've been a little confused about the whole "Maddy can't fly" thing, I decided to write to Maddy's NICU pediatrician for clarification on a few issues. To make it a little simpler, here was my email:
Dear Dr (name),

I wanted to ask you some more questions about Maddy and flying. I realise that via email may not be the best way to ask so if you prefer, I can call you or make an appointment to see you some time.

Is the main concern about flying Maddy's laryngomalacia? My understanding is that she has no problem with her lungs (although perhaps a smaller than average lung capacity?), only with her airway - is this correct?

If so, why is the reduced pressure of an airplane cabin a risk for her? Wouldn't it be an issue if the pressure was increased (ie, if she was going scuba diving) rather than being decreased?

Also, what medically needs to happen in order for Maddy to fly? Are you waiting for her to be stable for a longer period of time? Or are you waiting for the laryngomalacia to be completely better before saying that she can fly?

Thank you for your time,

Nicole

A day later, I got this response:

Hi Nicole,

There is actually no definite guidelines on flying for patients with upper airway obstruction.  I agreed that Maddy's lungs are fit for flight, it is just that the airway pathology has not yet been clearly defined.  Probably the reduction in airpressure to 8000ft and the reduction in partial pressure of oxygen should pose not much risk to Maddy. The reduced humudity may have some effect. Please just make sure she get her medical record clear and present this to the airlines to see if they need to prepare anything specific (they have additional oxygen via nasal canula).  The other main concern for them is whether their flight would be affected.

The chance is Maddy should be able to fly uncomplicated.  There is no particular risk of decompensation, but just in case Maddy gets some more airway problem (just like when she is on land) e.g (1) when she vomits (because of the change of airpressure, they have middle ear discomfort etc), (2) when the sputum becomes thicker due to the reduction in humudity (20-30% on board), the crew are confident to deal with this.

In summary, I would support you and Maddy to take the flight earlier than what I have recommended you, provided good preparation has been made.  It will be safe.

Best regards,

Dr (name)
 
So with this new information, we have been looking into the possibility of coming back home soon! Although just to be safe, we need to organise medical clearance forms for Maddy so that the airline will be aware of her medical issues. The doctor has said that likely the only thing we need to prepare for her is that we have oxygen available, just in case, although he says that it is unlikely that we will need it.

There have been multiple emails going back and forth between me and this particular doctor and I don't know whether it is due to language differences, or maybe my keenness to return home is clashing with his precaution - but I still do not fully know if and when we will actually get on a plane and return back to Australia. I need to arrange for someone to actually fill in the medical clearance forms for Maddy, and then for the airline's medical team to approve them. We need to book the flights, arrange leave for Bernard from work and for Lana from school (although she doesn't need "approval" so much, but I want to try to work something out so that we don't have to pay the monthly fee for the month that we are planning to be back home). And I'm trying to make sure that we do everything in the right order so that IF for some reason it doesn't work out, we aren't stuck with flights that we can't use or anything like that.

Right now, I need to get Maddy's medical records from the hospital. Really, I should have gotten them when she was discharged but I didn't for whatever reason. Then I need to find a doctor who is willing to give Maddy the medical clearance. I hoped that our pediatrician would be able to, but he seems to be wanting us to go back to the ENT and have her sign off on it instead of him. But last time we were at the ENT and asked her, she also referred us back to the pediatrician so I'm hoping that one of them will be willing to "put their money where their mouth is" so to speak (both have said that flying should be safe for Maddy already)! If not, I'll have to wait until we get Maddy's medical records before we can take them to a private doctor for their opinion, which will make the whole process take longer.

So I'm trying to not get my hopes up too much about this - but I REALLY REALLY REALLY want to get home... 

And just because every blog should have a picture, here you go ;)


14 comments:

  1. Great news - well getting there - love the photo by the way - too cute! (So jealous of those lovely girly bits and pieces!)

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  2. Kate - that dress is a newborn size dress that I bought for Maddy when I was about 8 weeks pregnant (I bought some boy stuff too, just in case ;) ). It NEARLY ended up in a bag before she came home from hospital, but thankfully due to her small ribs, she can still squeeze into it at seven months old! Only because it has plenty of "tummy room" though ;)

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    1. Heloo i hope ur doing well..hows ur daughter now ur daughter is beautiful and cute ... is she better now??

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    2. I hav also blessed with a baby girl her name is eshaal and she also suffering from larngomalacia here all dr said that she will better on her 2nd birthdAy ..she is now 5 months

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    3. Your daughter is so cute ..☺

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  3. Hi,
    I sped read through this so forgive me if I get some details wrong.
    This is how it works as far as I know in Oz.. It's ultimately up to the airline to decide whether they'll accept Maddy on their flights. The doctor is asked on a form about whether they think the patient is safe for flying or what equipment they need (eg. O2 etc). Sometimes a test can be done to see what happens to the patient at altitude, ie lower O2.
    I suggest ENT or Respiratory Physician for form.
    Hoep that helps a little.
    Hong

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  4. Hi Hong,

    Thanks - I think your understanding is similar to how it works in HK too. I asked the pediatrician first because he knows Maddy's case the best and he has worked very closely with all the other disciplines when Maddy was in NICU. I see him as Maddy's "health manager" in a lot of ways, liaising with the specialties on her behalf. If he cannot/will not fill out the form for us, I will ask the ENT who also has been working with Maddy since she was born. I have never approached her independently though, but I do have a referral letter to take Maddy to see her, so getting an appointment should not be too difficult (although it is more of a hassle). She has previously said that she considers Maddy to be safe to fly, but recommended that we wait for the pediatrician's opinion before we made any travel plans.

    I've heard of the test for altitude issues, but the doc thinks that the main issue for Maddy will be the lower humidity resulting in increased sputum rather than O2 desaturation (she has no lung problems, only airway) - maybe we can stick her in a room with a dehumidifier to see if that will be an issue for her ;)

    Thanks for reading and commenting! Appreciate your thoughts :)

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  5. Yay!! So exciting! I'm glad, Nic!

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  6. Great news! glad to hear your finally getting some answers. Love the picture just adorable.

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  7. Since I'm taking a break from Facebook I'm unable to get on and see if the earthquake or tsunami affected you in HK at all. Hope all is well!

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  8. sounds like you got some good news about being able to travel ... but wow what a process to get it to all come together! Hope you don't have too many difficulties getting a dr to sign off on the form, and getting the airlines to let you fly as well!

    And what a totally cute picture!

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  9. Heloo i hope ur doing well..hows ur daughter now ur daughter is beautiful and cute ... is she better now??

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  10. I hav also blessed with a baby girl her name is eshaal and she also suffering from larngomalacia here all dr said that she will better on her 2nd birthdAy ..she is now 5 months

    ReplyDelete