reluctant husband

[jenn-n-okla]

My DD age 8yrs has a chronic rare lung condition. She wears oxygen at night, when she flys, and at times when she is sick or very tired. We have traveled to Disney twice with her and have used the GAC, Double Stroller as a Wheelchair and the oxygen. She has been basically healthy for the last 2 yrs which was the last time we visited Disney. We are planning a trip for June 2010. My DH is not going to change is mind. "DD will NOT be using the oxygen during the day, and there is NO way she will be using a stroller." he says. "You have it in her mind now that she can not keep up with other kids and that she must be pushed around whenever she has long distances. This is just the exact opposite of what the doctor told us. He told us to let her be a normal kid". he says.
I have traveled with this child and know when she gets that "glassy eyed" look that she needs her oxygen. I also know that the humidity levels in Florida make a huge difference on her breathing. I know that standing in crowded lines with little air movement is not an easy thing for her. So I want to get a GAC at least even if she is walking. BUT....what do I do? How do I get DH to see that we do in fact need one. Keep in mind my DM and DF who are in their 60's, and very stubborn and proud will be going, as well as my 14yr old DD, my sister, brother in-law and 3 yr old neice....all for 9 days.
HELP! How do I solve this?

 

[cm8]

My DD age 8yrs has a chronic rare lung condition. She wears oxygen at night, when she flys, and at times when she is sick or very tired. We have traveled to Disney twice with her and have used the GAC, Double Stroller as a Wheelchair and the oxygen. She has been basically healthy for the last 2 yrs which was the last time we visited Disney. We are planning a trip for June 2010. My DH is not going to change is mind. "DD will NOT be using the oxygen during the day, and there is NO way she will be using a stroller." he says. "You have it in her mind now that she can not keep up with other kids and that she must be pushed around whenever she has long distances. This is just the exact opposite of what the doctor told us. He told us to let her be a normal kid". he says.
I have traveled with this child and know when she gets that "glassy eyed" look that she needs her oxygen. I also know that the humidity levels in Florida make a huge difference on her breathing. I know that standing in crowded lines with little air movement is not an easy thing for her. So I want to get a GAC at least even if she is walking. BUT....what do I do? How do I get DH to see that we do in fact need one. Keep in mind my DM and DF who are in their 60's, and very stubborn and proud will be going, as well as my 14yr old DD, my sister, brother in-law and 3 yr old neice....all for 9 days.
HELP! How do I solve this?

HI!!! I can relate to you on this one. He feels that you are holding her back and restricting her, and you mom, knows how your dd is really feeling since you probably deal with her the most and knows b4 it happens what she needs. I propose that you let your husband know that you think it is really for dd's benefit to still obtain the GAC and bring along her O2 and stroller for standby. That way, if DD needs it and you are already prepared, then no time should be taken away to meet her needs. On the other hand, you could tell him that in the event that DD needs those things, he should be prepared to make sure that she gets them since it was his idea to leave them behind. I would err on the side of caution, you can never go back once certain things have been set into motion and I would hate for something to happen to dd and you have to live with it for the rest of your life, you because you know in your heart what she needs, and your dh for not trusting you to make provisions for "just in case". I say it can't hurt to have it and bring it along, then to need it and not have it! IMO

PS, you could just tell him that you understand where he is coming from, but the GAC, stroller and oxygen would only be used for her when she is too tired and needs a break, and oxygen to help refresh her and help increase her stamina throughout the day!!! IHTH

 

[Cheshire Figment]

And the next time DD is to go to the doctor have your husband come along and voice his concerns to the doctor, and have him see what the doctor says.

 

[jenn-n-okla]

I would do that but we don't go to see the Pulmonologist till the week AFTER we get back from Disney. Knock on wood she hasn't been sick at all this school year.
With her condition being a rare lung condition, and her being one of the older kids with her specific form, the doctors are actually seeing what she is doing. I really think I will let it be up to Julia to say whether or not she wants to take the oxygen each day. I think a few hours of standing in long hot lines with her face turning red, the whining, the "I'm tired" ect. ect. ect, he will go back and get it. We are staying at Poly so the days in which I will be taking it no matter what he says will be EPCOT, and AK, and the day we treck over to Universal. Heck I will roll the machine around myself. I don't doubt him in the fact she probally won't need it all the time. Two years ago there were many times she had the machine but didn't have it turned on. When we would get close to the entrance of a ride she would stick the tubing on.....I know ...I know, bad....don't flame me.....it was her idea at age 7. My DH is from the whole age group that disabled means you are blind, missing a limb, or mentally challenged. Never mind the fact I am a special ed teacher and tell him otherwize.

 

[Mary976]

What about creating some type of action plan together before you go? Like make a chart with the numbers 0-10, 0 being feeling fine, and 10 being worst ever. Then have her (with you and DH there) describe situations that meet the criteria for the all the numbers, like 5 might be starting to get winded, headache, tired, etc., for whatever her symptoms are. Then, come up with what you will do for each number, like at number 6, she rides in the stroller, number 7 gets O2 and so on (of course, I'm totally pulling these examples out of thin air...you'd have to figure out what works for you guys).

Also, do you have other objective ways to measure how she is doing? You mentioned how her eyes look, and then do her lips turn blue-ish, does the skin around her ribs pull in when she has trouble breathing or anything like that? Are you able to check her pulse ox? My DD has a portable pulse ox that we use when she is having bad asthma symptoms. Just recently she had been sick for a few days, she thought her asthma symptoms were okay, but her pulse ox was so low we had to go the ER.

With your DH, I agree that framing it as a discussion about being prepared could be helpful.

Good luck!
Mary

 

[alizesmom]

What about a compromise. You get the GAC but it remains in his pocket unless needed. Store some oxygen at the first aid station where you could get it and if your daughter tires, rent a wheelchair? Karen

 

[OneLittleSpark]

I think I agree with the others, that you and your husband should sit down and talk through each of your concerns and worries. You might also want to have a discussion with your daughter involved as well, but I think it would be good to have the 'grown up' talk first, so you can both frame your opinions into words, and hopefully have a calm and reasoned discussion with your DD present. Of course, I'm not saying that you or your husband will fly off the handle, or be unreasonable, at your first discussion, but this is a very stressful and difficult conversation to have; if you have talked it through together first, you will fully understand each other's view points, and can be more of a united front. The last thing you want, is for your daughter to feel like she's having to pick sides . I'm not trying to suggest that you are doing this at all, I'm sure you are both wonderful parents, but childhood is a very mixed up time, and it's easy to get overwhelmed and confused.

I think that Mary's number scale might be a good tool, for helping her put things into words. Perhaps if you establish this system before you go, so she's comfortable with it for the trip. You could maybe start by asking her to keep a record every few hours of how she is feeling, for a few weeks; then move towards her just telling you when things change. For instance "I'm getting worse right now, I was a 4, now I'm feeling more like a 6". This will not only give you and your hubby an easy way to monitor her condition, without having to ask her all the time; it will also help her to feel more in control of her own condition, so she will be able to say what she needs and when.

I do understand where your husband is coming from; he just wants to let your DD be a 'normal' (whatever that is) little girl, and enjoy her childhood without having to worry. However, I think she will enjoy the trip much more if she knows that she at least has the option of getting oxygen when she needs it. As Alizesmom said, you can store the oxygen in the First Aid room, if she's not using it very often, so it's just there as a backup. Also, if she starts having problems, and you don't feel she'll be able to walk back to the first aid room, you can ask a CM for a wheelchair and they'll bring one around to you. They have a number of chairs in backstage areas, all around the parks for people who need them. They also have an EMT standing by, though I do hope you never need to call upon them .

One final thing, if your daughter does need a set of wheels, be aware that she might feel uncomfortable about being seen in a stroller. You can rent pediatric wheelchairs from some of the off site companies listed in the FAQ thread. It might be a good idea to at least have their phone numbers in your back pocket, in case they're needed. They may even be able to attach something to let you put the oxygen on the back of it, if she is having a particularly bad time.

However you decide to handle the trip, I hope you all have a wonderful time, and that her condition is all but forgotten in the Disney magic

 

[jenn-n-okla]

So DD and I made the chart out like someone suggested. I think I will let the travel dates get closer before we present it to DH. This way I can start using the chart now so we can see exactly how good it will work.

 

[Schmeck]

Also realize that Disney's official policy for stamina issues is to use a wheelchair (stroller as one) or ECV (your daughter is too young), not to issue a GAC. Also, there's a lot more walking in between attractions than in the queues, so a GAC wouldn't help for that. You could get a GAC to use a stroller as a wheelcahir in the queues though.

A GAC wouldn't cover your whole group either - only 5 extra people get to go in on the GAC.

 

[Smith70592]

I may be able to give you alittle insight on how your DD will remember your family vacations in further. I was born with a chronic lung disease,Cystic Fibrosis. Treatment for CF requires taking many different medicines throughout the day, inhaling nebulizer medicines a couple of times a day, and having respiratory therapy treatments up to four times day to loosen the mucus in my lungs.

Your Pulmonologist is correct when he said "let her be a normal kid".
I guess my point is that my parents aways let me live a normal life growing as possible,and never put any restriction on my actives or dreams. IMO she just wants to live as close to a normal life like everyone else her age. My trips to Disney was some of the funnest times that I had as a child . I am greatful to my parents for allowing to feel I could to anything I set my mind too and not making me feel I am any less then anyone else bescause I have a inherited chronic lung disease.


Just my 2 cents

 

[Bete]

you could have a doctor phone call about all of this before the trip. I think trips are a special situation and it's not what I consider to be a normal circumstance. Many docs will speak to you for a few minutes over the phone. You may have to leave a message about it first. I would explain the Disney vacation, the duration and that you are going when it's warmer there and higher humidity.

I'm not a doc or a nurse, but I take care of my mom who is 88 and she has COPD. Her oxygen levels have been very good. The nurse uses a finger device to check her levels when we visit. I know you can buy these devices and they are very portable. They don't look hard to use, either. They don't come cheap (probably about $500), but it could be a very, useful tool for you under the circumstances. Again, you need to get more info about all of this from your doc. It could be a good reason to visit the doc before the trip. I'm not sure if you need to go to this extreme, but it would be safer then just guessing about how your daughter feels. There may be other tools available, too. I would think the first aid stations at Disney could measure her oxygen level, as well, but I would make some calls to Disney to find out what services are available in first aid.

Also, how is your daughter doing at home, right now? If she's mostly passive I would be a little worried about your hubby's attitude for the trip. If she can be a normal kid at home then she has a good chance of being a normal child at Disney. I would certainly build up her activities at home before chancing anything on a trip. I would always rather be on the safe side and have oxygen readily available. It would be a real bummer to go to the ER on your trip for something that could have been avoided with the proper precautions.

I would try walks with her now and see how long she can last without needing oxygen using the scale tool, right now. Using the scale now will let you see how she's doing right now and also it would be good practice before the trip to make sure it will be a reliable tool for you. Build up with a little more walking each time you do it. You may have to make a game of it to keep her interest. Maybe, do a reward for it, too.

So called normal is not using any means of additional oxygen and that's not the case for you. I don't believe in being over protective, but I don't believe in being reckless, either. Your daughter is precious and I wouldn't want her in distress.

I would always want to be on the safe side. No one lives in your daughter's shoes, only she knows what's what, but you can't rely on a child for these answers totally.

 

[TillyMarigold]

The nurse uses a finger device to check her levels when we visit. I know you can buy these devices and they are very portable. They don't look hard to use, either. They don't come cheap (probably about $500), but it could be a very, useful tool for you under the circumstances.

Are you talking about a finger pulse oximeter? The little thing thing that goes around your finger and then shines a light and gives a readout of the oxygen saturation in your blood? (Normal is close to 100, below 90 is dangerous.)

They cost about $50-60, maybe up to $100 for a really fancy one.

 

[AKADrea]

I totally understand wanting her to be "normal", but you also want to be prepared just in case. My son also has a chronic lung disease, Cystic Fibrosis, and while I allow him to just a kid, I also need to be prepared for the worst! Getting a GAC doesn't mean you have to use it, and your DD doesn't even have to know that you got one...I don't see what your husband's big problem is with being prepared

 

[Bete]

Are you talking about a finger pulse oximeter? The little thing thing that goes around your finger and then shines a light and gives a readout of the oxygen saturation in your blood? (Normal is close to 100, below 90 is dangerous.)

They cost about $50-60, maybe up to $100 for a really fancy one.

I don't think this is what I was talking about, but maybe it is. I did a search and the device I was talking about looks a little different. I'll have to ask for its proper name. A while back my nurse made it sound expensive; because, I asked about the one she was using on mom. Maybe, it had some bells and whistles.

I would think that would be a great tool for mom to use here on her daughter.

 

[happymommy]

Sorry, but it's late here now, so I didn't read every post.

My DS has asthma, and my DD tires easily. Both are relatively healthy (except for DS asthma and his severe food allergies and ADHD).

I brought a stroller for them to share until DD was 7. She tires easily from walking. It IS WDW! Same trip, both kids got sick (different times) and were burning up with fever. I would never have made it back to our resort without it (DH doesn't come along many times, as he has a lot going on at work). Now, we walk a lot - I do believe I have logged as many as 15 or 20 miles in a day at WDW ( I love to walk, so I'd rather push a stroller than wait). I do like to also take it easy, but to me walking is enjoyable and relaxing. Whatever my kids find interesting is fine with me.

Why not just bring what you MAY need, just in case? I'm sorry, but you are not a victim. Just do what you need to do.

 

[jemimabean]

Coming in late to this thread, but can't help but throw my $0.02 in too. (We also live in Oklahoma and have a daughter with a rare lung disease!)

We have a "finger checker" (also called a pulse oximeter or an oxygen saturation monitor) that we use at home almost constantly. My dad bought it for us after our daughter was put in ICU when she was four. Now we can check her daily at home to see how she's doing - we know what her norm is, we know when she's heading downhill, and we know when things are very, very bad.
I can't recommend them enough. They ARE pretty expensive for one that works well - they are notoriously a pain in the rear at times (to get a good reading), so I recommend trying them out at a medical supply store before buying if at all possible.

We have had this one for over four years, and it has been exceptionally accurate (we often take it to the doctor or hospital with us to compare to theirs). I can't recommend it enough:

http://www.clinicalguard.com/bci-digit-finger-pulse-oximeter-p-48.html


As for oxygen, I'm glad that it sounds like you will have it for your daughter. Having oxygen isn't a luxury or something that you can live without - when kids need it, they NEED it right then, and I'd much rather err on the side of caution. It's not like a packet of extra wipes or sunglasses that you can easily buy at the park, you know?

Anyway, mostly just wanted to say hi! I hope that your daughter is doing really well.

 

[Nicole&Becker]

I have not yet read all of the responses, but I would like to offer my suggestion. I would say that a trip in another part of the coutry with different climate doing unusual things as it would relate it normal life is not the same thing as while she is at school all day or even around town in your home town.

I have asthma, and the humidity in the summer in FL was awful for me. I had to use my inhailer way more than I had the previous year. Also the foliage is different as well as being exposed to so many people and everything else. My kids were both healthy before our last trip, but came home on the plane throwing up. We are not sure why but it was not fun. And these are pretty normal run of the mill kids health wise. I would suggest that you plan for her to use the Oxygen while there and the stroller. If she needs it you will be prepared. If not, then you will have the peace of mind in knowing that you were prepared anyway. Also, the idea about letting your daughter choose what she wants to do is a great idea. I am sure she is old enough to know what her limits are. It is not a good idea for anyone to push too hard past their personal limits on a vacation in another climate and part of the coutry. That causes stress to the body and is a sure fire way to leave you up for illness. She might even get some kind of food poisoning, or have a bad reaction to something in the air that they spray around. All of those things could leave her open to getting really sick and if you are no prepared for that, she could spend months recovering. So play it safe. It is just vacation. When she is at school, sure, she can tough it out, but not on vacation when there are so many unknowns.

Disney changes all the time. So even if she did fine the last time you were there, that was years ago, and likely things have changed a little. It could be the laundry soap, the solution they use on the carpet, the stuff they spray on the plants, the plants they have in the parks, the animals, the bugs that year and how much they need to spray for them, the way food is prepared at that time, the food that is served.... There are loads of things that could cause a bad reaction in her that would require her to rest and have extra O2.

The other thing I would suggest is to just phone her dr and ask his/her opinion about the trip and how it should be dealt with. This could give your husband some peace of mind as well. That way you don't have to schedule an appointment, phone calls are free to them!

Good luck to you!