Off to see the "Real Tree" - April 19th - April 26th! Ali's Wish Trip PTR!

[kellyw8863]

Joining in, sorry to be late! I am sorry that Gabe had a hard time with the rules. Sounds like he is happy where he is now. Congrats on being picked for the Big Give!!

Hello there! Thanks so much. Things always have a way of working out.

following this thread now. I'm amazed by Ali's strength.

Thank you! She is one tough little cookie. She drives me batty some days, but I know it's that spunkiness of hers that keeps her going when things get rough.

Since some of you seem interested, I thought I'd post some side-by-side pics. The AMT Mini One is a 12fr 1.5cm and the Mic-Key is actually a 14fr 2.5cm (given to us by a friend to make a bear for Ali before her surgery). I left the pictures big so they'd be easier to see.

Sorry about the glare -

Yup, that one on the right looks like Elke's (hers is 14 fr 1.7 cm -- does that mean she's huge? She kinda is....)

Thanks for the tutorial -- seriously. We weren't given a choice -- just the Mic-Key. And since Elke's is hopefully shorter term, perhaps we may just stick with it. But it's nice to know there are other options out there.

As for your aversion to photos being taken, I suffer the same problem (as I mentioned on Ali's CB page). My husband gets upset with me because he says that, after I'm gone, my children will have nothing to remind them of what I looked like, it's that bad.

I don't think it means she's huge at all! It just means that the surgeon created a larger stoma and the length could have to do with the angle (stomach positions vary). I do hope that it's for the shorter term for Elke. About the photos, that's why I'm determined to take advantage of the photopass. It may hurt, but I'm determined.

I admire you guys for dealing with this stuff all day, every day. (I know it's weird to say that because it's not like you choose to deal with it, you do what you have to, but still). I thought it was a pain to put Phoebe's AFOs on every day and to have to find shoes roomy enough to fit over them.

You know, it's not that big of a deal. I'm just so thankful that Ali is doing as well as she is, as I have known many moms of mito kids who have lost their children much too soon. And the AFOs are a pain! We usually stick with Crocs because I don't have the patience to deal with anything else. Especially now that she has hinged AFOs. Nothing else seems to fit. So it's all relative!

I do understand your aversion to the camera as I don't find myself to be all that photogenic either. I 'run' when the camera comes out. But as far as your picture......................


I'm with Amanda..................how clever of you to include such a tiny picture for my middle aged eyes. I must say however, I do so like your red dress!!!!!!

Thanks for posting the pictures! The AMT Mini-One actually sounds like it might be better for Aidan. I'm going to talk to his ostomy nurse about it. But in the last several months, we've had anti-reflux valve failure on all but one, we've had 1 pulled out, we've had one balloon failure, and lots of middle of the night accidental med port openings. Heck, the "catch" for the med port probably would've been enough to convince me to talk to his nurse. Add the lower profile and better reflux valves, and I'm almost sold. AMT should have you on their payroll.

No, seriously, I didn't really see where we had options, other than the Bard Button, but it's a non-balloon and that scares me a little. I think the AMT Mini-One would probably work great for us.

I showed Aidan the pictures last night and he said, "Hey, she's getting a tubey snack!" We've always called his feeds tubey snacks since he was little. You know, instead of Scooby snacks. But he thought that was the coolest thing! Thanks for posting the pictures. I don't know what you've got up your sleeve that prompted the picture post, but thanks for posting them, whatever your reason.

I love it - tubey snack! I don't think it's so much that I love the AMT, but I really hated the Mic-Key. The only thing that I really don't like about the AMT is that the extensions can be tough to hook up, but I think I already mentioned that. And there's no way that she could go with a non-balloon. The PEG to Mic-Key change was such a nightmare, that I never want to put her through that again.

I love that!! Tubey Snacks!! So cute!!!

I have to say, our kids are pretty amazing. Brigitte knows how to do her meds herself!!

Kelly, can you insert a 5cc syringe right into the "hole" on the AMT?? We tried the AMT at one point, but Brigge's stoma wouldn't co-operate. The stem seemed to be a bit thicker than the Mic-Key and we were literally trying to force the AMT in and got no where. It is a great little button though. Glad its working out so well for you!!

Ali does her own meds, too. And can run her pump, which bites because she'll turn it off and unhook herself when I don't know it. You can insert the slip-tip syringes right into the button, which is how I give her morning meds to avoid dealing with extensions. I don't think the stem is so much thicker as the material is much softer and more flexible than with the Mic-Key. The kits now come with an introducer that almost looks like a golf tee. It goes into the button to keep the stem straight while you push it through the stoma. It makes changing it out so much quicker. It works well, but like I said, I just really hated the Mic-Key.

We got our personal days for after April vacation approved today. Next step is sending a letter off to Ali's doctor for him to sign regarding everything that needs to go carry-on. But for now, off to put the girls to bed!

 

[pnutallergymom]

Ahhh...the kit we tried didn't have the introducer. That must make it alot easier. But, we haven't had any problems with our Mic-Key in 3yrs so we're sticking with what we got!!!

Glad you got your personal days approved. That must be a big weight off of your shoulders!! Its going to be here soooo soon!!!

 

[erika412]

Days approved... doctor letters... It's getting closer!!!!!!

 

[kellyw8863]

Ahhh...the kit we tried didn't have the introducer. That must make it alot easier. But, we haven't had any problems with our Mic-Key in 3yrs so we're sticking with what we got!!!

Glad you got your personal days approved. That must be a big weight off of your shoulders!! Its going to be here soooo soon!!!

The introducer is pretty cool, but hey, if it ain't broke, don't fix it, right?

Days approved... doctor letters... It's getting closer!!!!!!

I know! I was a little worried about the personal day because I've managed to use all of my sick days already.

Okay, for those of you who have already been and those who are going soon, what do you consider necessary as carry-on? I'm thinking of things that will need to go in the letter of medical necessity. Obviously, all of Ali's meds will need to go on the list in addition to her pump, Pedialyte, a few cans of formula - anything else that I'm not thinking of? We plan on having most of her enteral supplies shipped directly to GKTW. Should I plan on bringing respiratory stuff (pulse-ox, neb meds) just in case? It's not stuff that we use often, but if she's swimming and aspirates or gets sick, then we'd need it. I don't want to overpack the medical stuff, but I also want to be prepared just in case so our trip isn't ruined. What are you guys doing?

 

[Thumper321]

The introducer is pretty cool, but hey, if it ain't broke, don't fix it, right?



I know! I was a little worried about the personal day because I've managed to use all of my sick days already.

Okay, for those of you who have already been and those who are going soon, what do you consider necessary as carry-on? I'm thinking of things that will need to go in the letter of medical necessity. Obviously, all of Ali's meds will need to go on the list in addition to her pump, Pedialyte, a few cans of formula - anything else that I'm not thinking of? We plan on having most of her enteral supplies shipped directly to GKTW. Should I plan on bringing respiratory stuff (pulse-ox, neb meds) just in case? It's not stuff that we use often, but if she's swimming and aspirates or gets sick, then we'd need it. I don't want to overpack the medical stuff, but I also want to be prepared just in case so our trip isn't ruined. What are you guys doing?

I typed up a packing list for Aidan's medical carry-on. Do you want me to email you a copy?

 

[kellyw8863]

I typed up a packing list for Aidan's medical carry-on. Do you want me to email you a copy?

Do you mind?! That would be great! My email is kellyw8863@yahoo.com . Thanks so much!

 

[erika412]

Granted I didn't have anything like you'll be carrying, but we had Megan's meds and a syringe and needle for hawaii. The airport people didn't even flinch and were not interested in seeing the letter. They did test both my and Brian's hands with a little gauze thing.

Also, we did bring Mary's nebulizer and meds. We just put it in the suitcase though.

 

[Momofwishkid]

The introducer is pretty cool, but hey, if it ain't broke, don't fix it, right?



I know! I was a little worried about the personal day because I've managed to use all of my sick days already.

Okay, for those of you who have already been and those who are going soon, what do you consider necessary as carry-on? I'm thinking of things that will need to go in the letter of medical necessity. Obviously, all of Ali's meds will need to go on the list in addition to her pump, Pedialyte, a few cans of formula - anything else that I'm not thinking of? We plan on having most of her enteral supplies shipped directly to GKTW. Should I plan on bringing respiratory stuff (pulse-ox, neb meds) just in case? It's not stuff that we use often, but if she's swimming and aspirates or gets sick, then we'd need it. I don't want to overpack the medical stuff, but I also want to be prepared just in case so our trip isn't ruined. What are you guys doing?

We were thinking the same thing as far as the neb meds. Gavin doesnt need them often but we decided better safe than sorry so will be bringing everything he might need. I'd rather have it than end up in the hospital for something we could have brought.

 

[Thumper321]

Okay, I emailed it to you. Let me know if you have any problems with the file type.

 

[kellyw8863]

Granted I didn't have anything like you'll be carrying, but we had Megan's meds and a syringe and needle for hawaii. The airport people didn't even flinch and were not interested in seeing the letter. They did test both my and Brian's hands with a little gauze thing.

Also, we did bring Mary's nebulizer and meds. We just put it in the suitcase though.

If you don't mind me asking, did you end up using her nebulizer? We honestly only use ours during times of illness and I otherwise would never travel with it. But, I've also never traveled like this with her.

We were thinking the same thing as far as the neb meds. Gavin doesnt need them often but we decided better safe than sorry so will be bringing everything he might need. I'd rather have it than end up in the hospital for something we could have brought.

That's what I'm afraid of. Are you bringing his nebulizer or will your HHC ship one? I just feel like it's one more thing to bring, but then again...KWIM?

Okay, I emailed it to you. Let me know if you have any problems with the file type.

I got it, thank you! I emailed you back.

 

[pnutallergymom]

Kelly,

The first time we travelled with Brigitte, I brought alot of stuff with us...right down to all the monitors etc. We never needed it. Second trip...hardly anything!! My rule was if I hadn't used in the last two weeks, it wasn't coming.

Don't forget..if you end up needing nebs and meds etc...there is a pharmacy right at Wal-Mart which is right near GKTW. Is your nebulizer one of the new smaller ones?...they make a travel size one. My insurance company covered it for us with a necessity note...but I still won't be bringing it. If you ran into an issue, my guess is that GKTW would know where you could get a hold of one pretty quickly. Its all about your comfort level though...if you think you'll be nervous the whole time without stuff, bring it.

My carry on will consist of her pump, maybe 2 containers of formula, and her meds. Oh, and an extra change of clothes in the case of an accident. I don't even bring the pedialyte with me...worst case if something were ever to happen, they have water on the plane...and if your bag were to get lost, you can pick up Pedialyte at Wal-Mart.

Just my two cents!!

 

[Wee Annie]

Okay, for those of you who have already been and those who are going soon, what do you consider necessary as carry-on? I'm thinking of things that will need to go in the letter of medical necessity. Obviously, all of Ali's meds will need to go on the list in addition to her pump, Pedialyte, a few cans of formula - anything else that I'm not thinking of?

Kelly,

we have flown with Elke recently and I packed all of her meds (almost all -- at least 9 -- liquids), her syringes and ice packs to keep some of them cool in our carryon. Our GI dr was insistent that I pack an extra Mic-Key set in our carry-on, with water and surgilube, in case I needed to change her g-tube mid-air (! - like that was really going to happen). But I am one of those "pack the kitchen sink" type of people. Whatever makes you most comfortable. I also did have a letter of medical necessity (listing also things like the ice packs, water and surgilube), but found that TSA didn't really need it. I had TSA agents tell me that they were "supposed" to test each and every liquid med, but didn't. Perhaps because they knew some of them were chemo? Who knows. All I know is that bringing them through security was easy -- we just left extra time to explain and declare everything.

But it's up to you what you're comfortable with bringing or leaving at home. As mentioned, I'm a "kitchen sink" kind of packer. I bring my rescue inhaler even when I haven't used it in a month. And I brought Elke's morphine when we were going to be gone for 5 days and I didn't think we'd need it, "just in case." Just makes me feel better to have things with me.

 

[dmbfan]

We just came back and TSA said nothing about the IV fluids, meds, needles, formula even the 8oz bottle of Purrell that was in the carry on of Jake's medical stuff, but they questioned us about the 4oz water that I forgot to take out of my backpack...

I really would not worry about getting the letters. If she is wearing her backpack all they will do is swab the pump, and pat her down and you will be good to go.

 

[kellyw8863]

Kelly,

The first time we travelled with Brigitte, I brought alot of stuff with us...right down to all the monitors etc. We never needed it. Second trip...hardly anything!! My rule was if I hadn't used in the last two weeks, it wasn't coming.

Don't forget..if you end up needing nebs and meds etc...there is a pharmacy right at Wal-Mart which is right near GKTW. Is your nebulizer one of the new smaller ones?...they make a travel size one. My insurance company covered it for us with a necessity note...but I still won't be bringing it. If you ran into an issue, my guess is that GKTW would know where you could get a hold of one pretty quickly. Its all about your comfort level though...if you think you'll be nervous the whole time without stuff, bring it.

My carry on will consist of her pump, maybe 2 containers of formula, and her meds. Oh, and an extra change of clothes in the case of an accident. I don't even bring the pedialyte with me...worst case if something were ever to happen, they have water on the plane...and if your bag were to get lost, you can pick up Pedialyte at Wal-Mart.

Just my two cents!!

Her neb is one of the newer, smaller ones. I think I will bring it just because we have to be so aggressive with the start of any kind of cough. And then just one box of Xopenex. If we need more, we'll have it called in. And we need at least one small of pedialyte because that's really all she gets through her pump - we use it over water because of her metabolic issues. The rest of the Pedialyte we will either have shipped down with her enteral stuff or buy it at WalMart. I hope Brigge is feeling better.

Kelly,

we have flown with Elke recently and I packed all of her meds (almost all -- at least 9 -- liquids), her syringes and ice packs to keep some of them cool in our carryon. Our GI dr was insistent that I pack an extra Mic-Key set in our carry-on, with water and surgilube, in case I needed to change her g-tube mid-air (! - like that was really going to happen). But I am one of those "pack the kitchen sink" type of people. Whatever makes you most comfortable. I also did have a letter of medical necessity (listing also things like the ice packs, water and surgilube), but found that TSA didn't really need it. I had TSA agents tell me that they were "supposed" to test each and every liquid med, but didn't. Perhaps because they knew some of them were chemo? Who knows. All I know is that bringing them through security was easy -- we just left extra time to explain and declare everything.

But it's up to you what you're comfortable with bringing or leaving at home. As mentioned, I'm a "kitchen sink" kind of packer. I bring my rescue inhaler even when I haven't used it in a month. And I brought Elke's morphine when we were going to be gone for 5 days and I didn't think we'd need it, "just in case." Just makes me feel better to have things with me.

I think that's about where I am. I'm just so afraid that something is going to happen while we are down there. If she starts coughing at 2am, then we really need to start nebs then to avoid pneumonia/abx. Is that going to happen? Unlikely, but what IF it does? KWIM?

We just came back and TSA said nothing about the IV fluids, meds, needles, formula even the 8oz bottle of Purrell that was in the carry on of Jake's medical stuff, but they questioned us about the 4oz water that I forgot to take out of my backpack...

I really would not worry about getting the letters. If she is wearing her backpack all they will do is swab the pump, and pat her down and you will be good to go.

Great talking to you this morning!

We got a very nice surprise in the mail today from Nanci (TinkerbelleMom) - it is perfect!

The girls opening the package -

Ali modeling the contents. She will be wearing it to daycare tomorrow despite the fact we just got dumped on with over a foot of snow.

Ali giving herself her meds. The extension fit perfectly through the button hole!

The extension through the button hole -

And hooked up to her pump -

The whole dress is perfect! It fit over her head just fine, and notice the joy on her face at the idea of being able to wear a dress AND her backpack at the same time! Thank you, thank you, thank you!

And Rebecca, thank you so much for the picture! I know it was for Ali but Maya, my six year old, has declared that she will be writing back to Rebecca and can't wait to draw her a picture tomorrow. I know this is "just" a trial run, but thank you so, so much.

 

[TinkerbelleMom]

Yea! I'm glad it got there and it fits...even more glad that she likes it. LOL on wearing it to preschool in the snow, Rebecca is the same way. We don't have it as cold as you, but she has to wear a dress most days. I think we own leggings in every color possible. I'm sure it will look just as good with a t-neck and leggings.

 

[Momofwishkid]

Very cute dress, Ali looks adorable!

 

[jessica52877]

Love that the dress fits well and the buttonhole does the trick! But I love even more that Maya has a new friend to write to!

 

[xanphylus]

Love the dress! Wish I could sew good enough to make clothes. I might be able to swing the tuttu style skirts, but that dress is really cute! And may I say, Ali looks adorable in it!

 

[pipersmom]

She looks adorable!! Kelly..I love it..so cute! Nanci..awesome job, as always!

 

[*Toadstool*]

SO awesome that the dress will work out. I'm excited to make dresses for the girls!
She looks so happy in the pictures!