Piper's Practically Perfect PTR..Wish Trip! 3/2-8...Upd Pg 126- TR Link!! Hooray!

[pipersmom]

Thanks, Melissa! Just as I was getting ready to go to bed too :lol: we both know how that story goes! Will check out the first few pages tonight unless I get completely hooked..after all..I did have a nap today with Piper!

 

[chrissid7]

I am so happy to hear the great news!!!!!!!!! Now sleep lady sleep! Thats awesome about the o2.... just curious at what point or level for Piper do they require her to be on 02. Thats something that only seems to be taking place in the hospital for Alyssa but I have been wondering why we dont monitor o2 at home, especially with her lung function being so low. Im asking this week.

95-96 is her baseline.

I have been wanting to do an interview with Alyssa for months now but honestly we have talked about disney so much now I could answer all of the questions for her, but you have inspired me to do it! I loved pipers responses to them, I swear I am going to burst before you guys go! I am so excited for you both!

 

[Momofwishkid]

Yay for Piper!! It sounds like she is having a good day. The interview was so cute. Dont you just love the answers they come up with. It seems their always serious when your expecting sillyness and vise versa.

 

[pipersmom]

I am so happy to hear the great news!!!!!!!!! Now sleep lady sleep! Thats awesome about the o2.... just curious at what point or level for Piper do they require her to be on 02. Thats something that only seems to be taking place in the hospital for Alyssa but I have been wondering why we dont monitor o2 at home, especially with her lung function being so low. Im asking this week.

95-96 is her baseline.

I have been wanting to do an interview with Alyssa for months now but honestly we have talked about disney so much now I could answer all of the questions for her, but you have inspired me to do it! I loved pipers responses to them, I swear I am going to burst before you guys go! I am so excited for you both!

Good morning! I did get some sleep, lol, threatened Piper with death if she woke me up before 8! She normally wakes up around 7 or so, so I just made sure to leave her a snack and the remote...lazy mommy!

Piper's baseline used to be 99-100 (before this summer) and they want her at least 95 during the day without her pulse being in 120-130s. Nighttime number needs to be the same, but she really dips at night, so I know..I can't wait for you guys to go too!! Especially being from our chapter, you'll have the inside scoop! Are they renting a vest for Alyssa while you're down there, or are you having to haul yours?

Yay for Piper!! It sounds like she is having a good day. The interview was so cute. Dont you just love the answers they come up with. It seems their always serious when your expecting sillyness and vise versa.

She did have a good day. Thank you! And yes, there's no predicting at any time what will pop out of her mouth, God love her!

 

[kdzbear]

I am so happy that Piper is feeling better and you both can plan your trip together!

 

[dawnbu40]

I love the interview with Piper! I'm with her, I want to ride a ride with a character too

 

[pipersmom]

I am so happy that Piper is feeling better and you both can plan your trip together!

I am too! We had planned a trip to DC that we had to cancel when she got sick, and she really loves looking through the guidebooks, etc. It's going to be a blast!

I love the interview with Piper! I'm with her, I want to ride a ride with a character too

She wants to ride Aladdin's Flying Carpets with the Genie (I think she would marry him if she could), and I'm going to try to see what I can figure out when we get closer..I know it's not an unheard of thing to happen.

 

[maroo]

I love the interview questions!

We need some more of those!

You could do her must do's for each park!


I love the idea of dressing up the O2 - if you have to have it with you - or get the characters to autograph a cover for it...? Something you can take off and put back on. That would be cool!

 

[chrissid7]

You know thats a good question about the vest. Alyssa has refused to use the vest since she got the MIC-Key G-tube. She is afraid it will mess it up and with all of the other things we had going on at the time I didnt stress it. So I have been doing all of the therapies by hand (she prefers it too but it takes sooooo much time out of our day). I have been talking to her about trying the vest and I think today she might actually do it. We only used it for treatments in th morning, but it sure did make a difference haveing that extra 20-30 before she went off to school.

 

[pipersmom]

I love the interview questions!

We need some more of those!

You could do her must do's for each park!


I love the idea of dressing up the O2 - if you have to have it with you - or get the characters to autograph a cover for it...? Something you can take off and put back on. That would be cool!

Such a cool idea for the O2 if we need it, Maroo..I will def make a cover when the time comes if we need to do that! And must-dos is a great idea, I think we'll do that after she knows the dates and can be more involved with the planning.

You know thats a good question about the vest. Alyssa has refused to use the vest since she got the MIC-Key G-tube. She is afraid it will mess it up and with all of the other things we had going on at the time I didnt stress it. So I have been doing all of the therapies by hand (she prefers it too but it takes sooooo much time out of our day). I have been talking to her about trying the vest and I think today she might actually do it. We only used it for treatments in th morning, but it sure did make a difference haveing that extra 20-30 before she went off to school.

Holy guacamole, Chrissi! My admiration for you just went up at least ten fold! I hadn't thought about the g-tube issue..Piper hates using hers with her port accessed, but we just leave the left shoulder unbuckled. If you loosened the bottom strap or padded the MIC-Key do you think that would make any difference to her? We started doing the vest on Piper when she was 2.5, there have been very few times I've had to go back to hand CPT and it killed me! Do you at least use a percussor or something? Piper does the vest for 50 min at a time, I can't imagine trying to do it that long by hand....

 

[karenwwu]

We're actually in and out of Roanoke at least once a month (Dr's appts, shopping, etc) and I'll definitely let you know next time we come in for a long haul hosp trip. Piper would love having visitors, and an adult to talk to is always welcome, lol.

 

[chrissid7]

Such a cool idea for the O2 if we need it, Maroo..I will def make a cover when the time comes if we need to do that! And must-dos is a great idea, I think we'll do that after she knows the dates and can be more involved with the planning.



Holy guacamole, Chrissi! My admiration for you just went up at least ten fold! I hadn't thought about the g-tube issue..Piper hates using hers with her port accessed, but we just leave the left shoulder unbuckled. If you loosened the bottom strap or padded the MIC-Key do you think that would make any difference to her? We started doing the vest on Piper when she was 2.5, there have been very few times I've had to go back to hand CPT and it killed me! Do you at least use a percussor or something? Piper does the vest for 50 min at a time, I can't imagine trying to do it that long by hand....

Alyssa sisnt even get the vest untill she was 7 so I had already been doingit by hand for 5 years. I do 5 minutes per side so it ends up taking us about 30 mins 4xday. That doesnt include her nebs. I dont use a percusser either because I can actually get a great "pop" with my hand that just works better.

When she got the vest we started using it 2 times a day and I did the other 2. When she is in school though we rarely get 4 in, so I like to use the vest in the morning, I do the evening and night time one. I actually started thinking about how to sew a beld that would have a nice lil padded pillow that could be placed over the tube and tied so that the vest doesnt rub.

We are alos trying to come up with something that she can cover it with while at Disney because we are worried about it getting hit or pulled on by lap bars and things coming over and over all just for protection.

I think I am going to post that question on the WTU page too.

BTW she backed out on the vest this morning so I am going to try again for the later treatment. Her new Mic-key button came today too so now sheis all upset because we have go in and have it changed. I havent done it yet and would rather have someone there just in case. He is pretty upset about it.

 

[chrissid7]

jeeeze sorry for all of the typo's. I think I need a new keypad!

 

[maroo]

Wow.

I, too, am in awe of all the hand CPT. That hurts. And quite time consuming!

 

[pipersmom]

jeeeze sorry for all of the typo's. I think I need a new keypad!

I can be the typo queen..I'm just very ermm..uptight about my typos, so I usually double check, lol.

Alyssa sisnt even get the vest untill she was 7 so I had already been doingit by hand for 5 years. I do 5 minutes per side so it ends up taking us about 30 mins 4xday. That doesnt include her nebs. I dont use a percusser either because I can actually get a great "pop" with my hand that just works better.

When she got the vest we started using it 2 times a day and I did the other 2. When she is in school though we rarely get 4 in, so I like to use the vest in the morning, I do the evening and night time one. I actually started thinking about how to sew a beld that would have a nice lil padded pillow that could be placed over the tube and tied so that the vest doesnt rub.

We are alos trying to come up with something that she can cover it with while at Disney because we are worried about it getting hit or pulled on by lap bars and things coming over and over all just for protection.

I think I am going to post that question on the WTU page too.

BTW she backed out on the vest this morning so I am going to try again for the later treatment. Her new Mic-key button came today too so now sheis all upset because we have go in and have it changed. I havent done it yet and would rather have someone there just in case. He is pretty upset about it.

I don't blame you for wanting someone there, the first couple times I accessed Piper's port I did the same thing. I'm sorry she's so upset about it, it sucks when our kids need something like that done, it has to be done, and there's really no making it easy. We've actually tried dosing Piper with versed before I access her, but it did not help at ALL! When the stress level is at a certain point I think there's nothing we can do short of knocking them out completely, but of course with CF lungs, can't do that either.. I don't know what kind of vest you all use, but Hill-Rom makes a pad specifically for things like ports and Mic-Keys, if you call them they'll send it free as well..it's about 1.5-2 inches thick dense foam. Might be worth a shot, you could probably attach some sort of strap to it.

Wow.

I, too, am in awe of all the hand CPT. That hurts. And quite time consuming!

It does hurt..my forearms killed me for the week I had to do it on Piper..and being the that she is, she HATES hand CPT, which just added to the fun, lol.

 

[chrissid7]

I can be the typo queen..I'm just very ermm..uptight about my typos, so I usually double check, lol.




I don't blame you for wanting someone there, the first couple times I accessed Piper's port I did the same thing. I'm sorry she's so upset about it, it sucks when our kids need something like that done, it has to be done, and there's really no making it easy. We've actually tried dosing Piper with versed before I access her, but it did not help at ALL! When the stress level is at a certain point I think there's nothing we can do short of knocking them out completely, but of course with CF lungs, can't do that either.. I don't know what kind of vest you all use, but Hill-Rom makes a pad specifically for things like ports and Mic-Keys, if you call them they'll send it free as well..it's about 1.5-2 inches thick dense foam. Might be worth a shot, you could probably attach some sort of strap to it.

Thanks for the tip I will call them tomorrow. I guess Im just used to it becuase honestly I have family that gets nervous when Im doing CPT lol they say it sounds like im going to crack a rib on her but she really likes it when I do it and I do feel like I can really get those junky lobes good. Sometimes she can feel it and tell me where to hit her harder lol, weird but true.



It does hurt..my forearms killed me for the week I had to do it on Piper..and being the that she is, she HATES hand CPT, which just added to the fun, lol.

It must just be because ive done it so much and for so long, but when she is in the hospital and they are doing it all, when I get home I have to get readjusted to it all, I will get really sore.

 

[jordanyosh]

I like Maroo's idea if you have the O2 tank to get autographs.

 

[All7OfUs]

Hey There, Hi There, Ho There!!

Finally making my way over here to join in the fun! Sorry it has taken me so blessed long! I admit I didn't read too much of the in-between chit-chat, but did catch the interview! Great ??s

Piper is such a cutie pie! What a super mom you are!

 

[pipersmom]

I like Maroo's idea if you have the O2 tank to get autographs.

I really do too Jordan, and will definitely do that if she has to take it along!

Hey There, Hi There, Ho There!!

Finally making my way over here to join in the fun! Sorry it has taken me so blessed long! I admit I didn't read too much of the in-between chit-chat, but did catch the interview! Great ??s

Piper is such a cutie pie! What a super mom you are!

I'm glad you made it over! Thank you for the sweet words. Piper is cute and just a good kid in general..there are times I have to remind myself of that as I think about throttling her...lol. She just really deserves this trip

 

[GreatBiscuit]

What an amazing story! You had me misty eyed more than once. I'm so excited about Piper's MAW trip! I can't wait to see how it all turns out!