Advice Please!

[charl72]

My family and I have been invited to our nephew's Christening
in two weeks time, but the only problem is it's 150 miles away.
 I know it isn't that far, but we have two young children,
eldest  is 4 and youngest is 2 (with CF).  We had decided
that we would go, but last night changed our minds, because of the
distance.  I have now decided to go on the train on my
own, which would be a lot easier.  I very much wanted my
husband and children to go with me, but we decided it would be
unfair on our children.  Our youngest daughter has nebuliser
treatments to do twice a day, so it would also disrupt that.
 I feel really guilty, but know it is the right thing to do.
 My mum and dad are giving us a real hard time over it, saying
that we just don't care!  Any advice?  Sorry to waffle on
and if it's boring, but the situation is just doing my head
in.<img src="i/expressions/face-icon-small-confused.gif" border="0"><br>
<br>
Thanks.

 

[Nicole]

You know whats best for your family and don't let anyone make you feel guilty for that. Until they have walked in your shoes they have no right to say what you should or should not do.

 

[ashton2005]

If this is the first time traveling with your CF child and nebulizers i cn tell you from experience that it is nerve racking... it took me forever to go see inlaws in illinois about a 3 hour trip.... i found out though that nothing gets interrupted i did neb in the am before we left and in the pm before bed and had fun inbetween.... it is all up to you but i belive that still being able to get everyone out is good for everyone to stay sane(which we know is hrd with cf.. good luck with your parents and do what you feel is right..

 

[IG]

I really have to say don't let CF interupt your life much.
I mean I know there are things that your child has to do but there's so much you can do before CF becomes your life and your childs.
If that makes sense. I am a firm believer in the fact that I come before my CF but my CF is still an important part of me, but I need to treat both parts equally and not give my attention to one side more than the other. If I can work something out (take meds earlier/later) to do something I will. Even though I'm post transplant, before the surgery my family and I went to michigan all the time (we lived in Texas), went to San Antonio (an hour and a half away) etc.

Like Christi said usually treatments and stuff for short trips aren't interrupted, and worst comes to worst you can always take a nebulizer and have her do a treatment in a room away from all the activity. But also like what she said do what you feel is right. I wouldn't cut a trip just because of her CF, my personal opinion, and there's most likely more factors in play here than just that. I hope I don't come across as advicating that you go, because I'm not, whatever you think the best decision is, but that's always been my experience. Anyway good luck with your decision, I hope it works out best for you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[thelizardqueen]

I don't see the family all going as presenting a problem. If your one kid is on nebs twice a day, then that's once in the am, then again in the pm - you can still do a ton of stuff throughout the day. I don't see traveling as a problem. Like Candice says, you have to put yourself before CF, and 2 treaments a day on nebs isn't going to pose a problem. I would think differently if you were on more then 2 treatments a day, or on IVs.

 

[anonymous]

I have two children, Sophia is five and Jack is almost 3. They both have cf. We travel quite a bit. We just got home from being gone for three weeks (family camp, reunion, my sisters 150 miles a way etc). I find the hardest part is packing and making sure I don't forget anything. They have so much stuff! But our trips really aren't affected by their cf. We just make sure we have 30 minutes in the morning and 30 minutes in the afternoon/evening to do their treatments. I personally think driving would be easier if it is an option. Loading everything and carrying it around along with your kids might be a challenge on the train.

I try not to limit my kids activities do to their cf. I also don't want others to see them any differently because of their diagnosis. So I would go and have fun with your family!
Sharon

 

[amber682]

Is it just because of the neb treatments, or is it the long ride? If it's the nebs, don't let cf ruin the fun! And if it's the long ride, I'm sure people here can give you a ton of ideas on ways to keep the kids busy for the way there, or snacks or whatever. I say go and have some fun as a family!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[thefrogprincess]

As a CFer who never really got to travel much of anywhere when I was a kid let me just say this: You cannot let the CF disrupt family events/functions or other trips you may want to take. 150 miles isn't that far. I used to travel about that far just to get to my clinic appointments. Obviously your family understands your situation and would not let anything disrupt treatments. Sure its hard to travel with all the gear, but not impossible. To this day I resent the fact that I have never been off the west coast (at least that I can remember).

 

[julie]

Only you know what is best for your family, but at some time or another you are going to want to go somewhere as a family. Your child with CF is going to have to learn how to incoporate CF treatments into their life.

If it would be easier for you to get a travel nebulizer, so you don't have to worry about being near a plug in to use it, then I would recommend you try and get one ASAP. Many ins. companies cover it. Also, take the nebulizer meds in a small ice pack/cooler like thing. You can always bring a smaller one that would fit into a diaper bag so you take 2 treatments with you for the day. It's not going to kill either Pulmozyme or TOBI if they get a little warm throughout the day, as long as they are used in that day or within the next few days.

I'm sure traveling with 2 young children is nerve wracking in itself, and adding the CF stuff on top of it might seem overwhelming to you... I certainly don't blame you/your husband for the concerns and what seems to be a bit of anxiety. But... as others have said, and especially those WITH CF, don't let the CF stop you from letting your children have an outing.

I think it's rude that your parents would say that, but then again, if you aren't a "CF family" you just dont understand! Maybe tell your mom and dad your concerns, why you are hesitant, that you might need some help from them if you are going to make this trip work for you-and specifically spell out what you might need them to do. You might be surprised to find that they are willing to do what you ask if it will get you there....

Good luck whatever you decide

 

[anonymous]

Do you have a portable nebulizer with a battery pack? That helped us tremendously with our two youngest. We went to Disney when they were 2-1/2 & 4 and took our portable neb. It's a 16 hr drive but we did treatments in the car with the converter. You could do CPT in the hotel in the am/pm. If you have a battery pack for the neb, you can even do the treatments at the reception. We've done them at picnics, etc. We did have to pay $150 out of pocket for our portable neb (and no, we don't have a lot of extras, only did Disney because it was my parent's gift to us), but it was still well worth the money. If the treatments are the main reason you're considering not going, I'd reconsider. In the end though, you have to do what <b>you</b> feel comfortable doing. Good luck.

 

[charl72]

Thanks for all your advice.  The reason why I'm not sure about
taking the whole family isn't just because my youngest daughter has
CF.  We only had a months notice about the event, so most of
the nice hotels nearby are booked up, which means we would have to
do the journey in one day, which would be really tiring for the
kids.  It could be done, but I we had made our minds up that I
was going to go on my own, rather than put the kids through a
tiring day, they are only 4 and 2 years old.  Then, I told my
parents, our decision, and my mum was really upset, so it's kinda
got me thinking again.  I dunno.  

 

[anonymous]

Hi there,
I do know where you are coming from since I live quite a distance from my family but I do have a 13yr old son who is presently awaiting a double lung transplant and we have always found it worth the effort to particpate in Family functions. The kids so love attending (I have 3) and I found that if I contact my local CF clinic they were more that willing to assist me with planning the just in case scenerios which I was always worried about. Most times they can give you the name of the director of the closest CF clinic to where you are going to be and also my clinic would take the time to phone ahead and give them a briefing about my son and to let them know I would be in the area.

Just my thoughts on it...I think you should phone your doctor, it would be a really fun trip to do as a family and make the kids feel like they could do anything with a little planning.

 

[Liza]

Hi, I have two girls w/CF. Like many have said already, you know what is right for your family but don't let CF and treatments dictate family events. 150 miles really isn't that far. Everyone's suggestions about doing the treatments before you leave in the AM and then in the PM after you've arrived. Your children are young now and don't realize what is going on but later on if you avoid doing activities because of treatments it will become a problem. Your older non CF child may grow to resent the younger child w/CF. But for the here and now, it is a manageable situation.

I drove (with my sisters help) from North Carolina to Texas when my youngest was 6wks old and my oldest was just 3 and newly diagnose, then turned around and did it again to go home, 6 months later. You <b>can</b> do it. Everyone's suggestions are great. Use a small cooler for meds that need to be kept cold. A portable machine comes in really handy, if you don't have one now you should really think about getting one later. When my older daughter was in girl scouts and they started planning a camp out I went to our insurance co. and requested her new machine have a battery option. Way back then it was the Duraneb 2000 (by Pari, we later bought it's replacement the Duraneb 3000). At first they tried to deny it but I argued that her not being able to get one was an infringement on her way of life, they were denying her from being able to participate in something as simple as scouting and camping out. Percussion was done by hand back then. I have to say our ins. co. was reasonable and has continued to cover the machine we want. She is now in college and uses the Pari Trek. Great little machine! We bought one out of pocket for our younger daughter when she went to cheer camp two years ago. (Ins. had already purchased her a new machine and we can only get a new one every five years unless it breaks). The bag it comes in is about the size of a small camera bag.

I'd have to say the hardest thing about traveling w/CF for us has been to not take the entire medicine cabinet with us. My family jokes that I have a traveling pharmacy, if you need it Liza's probably got it. But the CF meds, I always take an extra day, an anticipate an extra meal and snack for each day for enzymes. I let my husband do the calulating one time for a Christmas trip home, we were short about 3 days! Never again. Luckily our old CF clinic remembered us and was gracious enough to call in a prescription for us. It was a two week trip.
I pack extra albuterol/saline for an extra treatment each day we are going to be gone, just in case. I use zip baggies for each different type of medicine, ampules in one baggie, daily oral meds in a weekly med. case placed in a baggie in case it opens and nebulizers in another and put it all in one of those overnight bags, the kind that comes when you buy a whole suitcase set, that small "carry on" bag with the zipper on top and usually a pocket on the side with a shoulder strap. I fit everything in there and carry the cold meds in one of those insulated lunch saks or lunch boxes with a freezer pak.

As for your parents giving you a hard time. If you really just don't want to go or just the hassle given the age. Then just tell them. If you do really want to attend then you should go. Your parents need to be reminded what all is involved with traveling with small children. If they haven't seen it yet, they need to. Get them involved once you arrive if you decide to go. It's time for them to learn because one day they may want your kids to visit or stay with them. That's what my parents did. They learned what to do in case they needed to help whether it was them visiting us or us visiting them.

Too long, I know, sorry. I hope my tips will be useful for any trips you may make.

Liza
(mom of 2teen girls w/CF)

 

[JazzysMom]

I doubt those that dont live it daily truly understand. If you arent up to the trip whether its 150 miles or 1500 then dont do it. Dont let them "push" you. That being said......you have to start somwhere. You doent want the kids to think that life ceases because of CF. Its a balancing act. Its hard for me. I dont enjoy travel a lot to begin with & then throw in my CF & having my daughter (tho its better now she is older) it really put me in a lousy frame of mind. Those that adore traveling find ways to do it with ease. Those that dont like travel cant do it so easily! Good Luck!

 

[Ratatosk]

I'm in trouble with my family right now because I haven't taken DS to visit them in AZ yet. But I'd have to catch at least one connecting flight, the airlines serving our City don't make travel easy and I'd be on my own with the carry-ons and a busy toddler. I HAVE traveled to Mexico and on several non-stop flights with my husband and it's do-able, but we pack the nebulizer, meds in a small cooler in our carry-ons and getting thru security is hit or miss -- the pulling us aside to examine the "breathing device" and almost missing our flight was nervewracking.

When we do travel, I have a list -- nebulizer, cooler, drugs, neb cups... Last fall we had a birthday party for my grandmother that was 2 1/2 hours away. We did his middle treatment at grandma's apartment and on the way home used a power inverter to plug the nebulizer into the cigarrette lighter of the car and gave him his tobi. On short day trips I pack the nebulizer, small lunch bag cooler with meds into a backpack with neb cups, portable dvd player and we sneak away to give ds his cpt and nebs. We just keep a bag (used to be diaper/snack bag) semi ready to go. Especially during the summer when we have to go to my inlaws vacation home to visit out of town relatives who don't want to see us, but want to see ds.

 

[folione]

My son's CF doctor says that the inhalers of albuterol and flovent are interchangable with the nebulizer (flovent taking the place of pulmicort). She quoted a study that showed the inhaler used with a holding chamber actually delivers more of the drugs than nebulizers for toddlers due to the tendency of nebulizer treatments to be hit or miss at that age. This is from an accredited CF clinic & Dr. so it seems reliable enough to believe it and our son has had good lung reports the whole time.

So we started getting our boy used to using the inhalers early on. This lets us make day trips a bit easier - even if we still have to pack the nebulizer for tobi, it cuts down on the time it takes to get it all done.