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

[pipersmom]

Thanks all for the prayers and good wishes, just posting a quick update since I had to be out and about picking up schoolwork and such. Piper is having an exacerbation, but we caught it earlier than normal, her x-rays are showing just a small spot of pneumonia. In the meantime her glucose levels were also high, so we're going to start a diabetic diet to hopefully hold off CF related diabetes as long as possible. Right now she's on 2 ltrs of O2, once we can get her weaned off that and her lung function up (she's at about 45%), we'll come home on the IVs. I've pm'ed our snail mail addy to maroo and chrissi, not sure how long we'll be at the hospital, so that will be the easiest way if anyone would like to send cards and such..someone from the family will be visiting weekends, and I'll need to make periodic trips home to feed the hermit crabs ...

 

[jordanyosh]

Thanks all for the prayers and good wishes, just posting a quick update since I had to be out and about picking up schoolwork and such. Piper is having an exacerbation, but we caught it earlier than normal, her x-rays are showing just a small spot of pneumonia. In the meantime her glucose levels were also high, so we're going to start a diabetic diet to hopefully hold off CF related diabetes as long as possible. Right now she's on 2 ltrs of O2, once we can get her weaned off that and her lung function up (she's at about 45%), we'll come home on the IVs. I've pm'ed our snail mail addy to maroo and chrissi, not sure how long we'll be at the hospital, so that will be the easiest way if anyone would like to send cards and such..someone from the family will be visiting weekends, and I'll need to make periodic trips home to feed the hermit crabs ...

Thanks Amanda.

Will continue praying!

 

[chrissid7]

Pipers mom also wanted to post, but ran out of time that PIPER WAS APPROVED FOR HER TRIP WOOOHOOO!

I hope that you get too meet with them soon and start the "other" balls rolling!!

Praying for Piper tonight, I hope that you are able to hold of the diabetes as long as possible (forever hopefully). We have had a couple of scares with that but thankfully nothing progressed.

Sending love to you and Piper!!

(BTW a friend of ours with CF was admitted to our local hospital tonight too, also stats dropping, but he says he feels fine. lowest he has been in 2 years)

 

[stacy347]

Will continue praying for Piper.

I'm so happy for you guys about the trip ~ hopefully that will keep her spirits up while she is going through this!

 

[maroo]

I am so glad you guys caught this one early.

Way to go!

I am continuing to pray for you guys. My prayer list has gotten so long that I have had to write it down. (Yeah, I know...I can usually remember every one of them.) But with the H1N1 kids, wish kids, etc, etc...gotten to be more than I can just remember. So - you are on THE LIST.

I have cleaned out my PM box so that I can receive PM's from you guys if you need her address! Feel free to let me know!

 

[pipersmom]

Thanks Amanda.

Will continue praying!

Thanks you for the continued prayers Jordan

Pipers mom also wanted to post, but ran out of time that PIPER WAS APPROVED FOR HER TRIP WOOOHOOO!

I hope that you get too meet with them soon and start the "other" balls rolling!!

Praying for Piper tonight, I hope that you are able to hold of the diabetes as long as possible (forever hopefully). We have had a couple of scares with that but thankfully nothing progressed.

Sending love to you and Piper!!

(BTW a friend of ours with CF was admitted to our local hospital tonight too, also stats dropping, but he says he feels fine. lowest he has been in 2 years)

Thanks Chrissi, according to the RTs here, there are more bugs going around than they've seen for a long time. We're hoping the glucose levels were only elevated because she's sick, but won't know until she's well and we can get a baseline. Praying that Alyssa stays healthy!

Will continue praying for Piper.

I'm so happy for you guys about the trip ~ hopefully that will keep her spirits up while she is going through this!

Thank you, Stacy, Piper actually takes it all in stride, she loves all the attention..I usually have to bribe her with ice cream the day she's discharged!

I am so glad you guys caught this one early.

Way to go!

I am continuing to pray for you guys. My prayer list has gotten so long that I have had to write it down. (Yeah, I know...I can usually remember every one of them.) But with the H1N1 kids, wish kids, etc, etc...gotten to be more than I can just remember. So - you are on THE LIST.

I have cleaned out my PM box so that I can receive PM's from you guys if you need her address! Feel free to let me know!

Thank you, maroo, as I said up there ^^^ the RTs here have said this is the worst few months they've seen in a long time, even aside from h1n1. Hopefully once the colder weather sets in some of the bugs will die down.



Piper News (lol) We're pretty much just going through the routine here, her O2 is down to 1 ltr, which is definitely a good thing. She's been doing a lot of crafts and playing new video games (the child life dept here is awesome), and doing homework when I make her..much to her chagrin! Hopefully by the middle of next week we'll be ready to get out of here, for some reason she's spent an awful lot of Halloween seasons in the hospital. Again, thank you to everyone for the prayers and positive thoughts.

 

[Uuaww]

read your trip report, good luck on everything from the islands!

 

[2specialkids]

Hugs to Piper and you. It never ceases to amaze me how strong these little ones are. They just take it all in stride. I suppose it's the norm for them so they get to expect it but it can make a momma crazy. Prayers are still going up here.

 

[maroo]

Hugs to you guys!

Still praying for you guys!

I am glad that she is comfortable and it sounds like they are taking great care of you guys - and keeping you entertained!

 

[chrissid7]

Just thinking about you! I hope you and Piper had a good weekend. Has been weaned down anymore? Fingers are crossed and saying a prayer for better PFT's this week. Hang in there girls!

 

[pipersmom]

We were just released today Piper is still on oxygen, but only a half liter. Her PFTs are still only around 46%, but we're hoping that will go up as she continues the IV's at home. Right now we're not sure what the prognosis is going to be on the O2, her chest x-rays have actually improved a lot, so the fact she's still requiring the O2 could mean that her blood flow has started to bypass the worst part of the damage in her lungs, and the O2 is going to be an indefinite thing. It's just a matter of waiting to see what happens. She did not want to leave (what else is new??), but the thought of trick-or-treating seemed to help that along.

On the trip front, we got the names of her wish granters, and should be getting a phone call any day now to set up a meeting with them, hooray! The child life specialist at the hosp asked Piper if she had made a wish yet, and Piper's immediate response was "no, but I'm asking to go to disney in 2011!" She then immediately started telling Jill everything she wanted to do at the World. I'm thinking the surprise is definitely going to work considering she still hasn't caught on ..lol.

Thanks again all for all the thoughts and prayers, and I apologize for not updating sooner, someone was very impatient this time with Mommy leaving her for more than 10 minutes.

 

[yinyanggirls]

I'm glad that TrickorTreating gave her some incentive. So happy you are finally home!

 

[chrissid7]

YAY!!!!!! So glad yall are home!!! I got her letter back in the mail today, it was my fault, I wrote the addy down for Alyssa to write it and I was rushing and well lesson learned. We will be resending it on Monday because Alyssa actually had something that she wanted to add so I need a bigger envelope.

What is she going to be for Halloween? Alyssa is an "elegant Witch". Just a cute lil witch. We are having a costume party so My husband and I are going as Dog the Bounty hunter and his wife beth lol. Have a great weekend!

 

[jordanyosh]

glad you're home!

 

[kdzbear]

Yeah! I am so glad that Piper is home! Have fun trick or treating!

 

[maroo]

Have fun trick-or-treating!

Keep us updated on Piper. Praying for you guys!

 

[pipersmom]

Okay, boring things first..lol..health update...Piper's still doing O2 pretty much 24 hrs a day, the exception being during treatments. After speaking with her Dr about my concerns today, she will not be going back to school until spring. We'll do some combination of homeschool & homebound schooling. I am a bit apprehensive about this because with it being just the two of us, we sometimes drive each other crazy, but healthwise, I know it is the best choice for her right now.

Now for the fun stuff! I got a call from her wish granters today and we're meeting with them Thurs evening..woohoo I know it's going to feel more real after that happens, for me anyway. One of them is actually from my small town, which really surprised me, but I think is so cool I will take some pictures when they're here, and will be sure to update

Halloween went really well..Piper dressed up as Hermione from Harry Potter..she was very cute! ( I don't have pics..bad mommy) We went to a Trunk or Treat event..it was drizzling and we knew that would be relatively quick. What I didn't think about was her costume. I heard several people commenting (seeing the back of her costume) that she was a witch. Now, I know Hermione is technically a witch, but I truly didn't think about it that way..was thinking more of the literary character thing, I guess. At any rate, Piper didn't notice, and no one approached us directly, so I guess it was okay. She got a ton of candy between that and our immediate neighbors, and not too much choccy (which she can't have, and I don't need, lol). So it was a great night, and she loved being able to trick or treat on Halloween!

Thanks all for the continued prayers and positive thoughts

 

[Maryrn11168]

Hi....I am new to this thread, but not the boards. A little background info..I too am an RN. I have been a labor and Delivery nurse for close to 20 years!! I was shocked during my first pregnancy when I was told that I was a CF carrier. My OB assured me that since they started testing a year before not ONE of his patients spouses had also come back a carrier and not to worry...well 2 weeks later I got the call that my DH was also a carrier. Amnio showed no CF. Pregnancy #2 (wanted a 2nd!!) DD is a carrier...then came surprise baby number 3!!! Brian was born 17 months after DD, the sweetest most energetic little boy who happens to suffer from CF. The first 18 months were rough in and out of the hospital until his port was placed. That lasted him for 5 years. It became infected labor day weekend....he was admitted and eventually they removed the port. 5 days after the site became infected, wound opened and new fun started!!! The wound infection was gone, and the wound almost completely healed when the coughing started...very agressive b/c now we have no port and his latest hosptial stay proved he has very bad veins (9 attemps for an IV and they still cpuld not get the line in!!!). Dr sends for an x-ray and he has pneumonia!!!! Now we have a PICC line and he has missed another week of school!!! I think thats 4 weeks so far this year!!

Now to how I found this thread!! We have been to disney numerous times...we actually own in DVC! But I called MAW today b/c Brian wants to go on the new Disney Cruise Ship the Dream. So I started to surf the boards came across this thread and read the story of Piper and was truly touched!!! MAW was faxing the papers to his doctor today and I hope he will get approved. The last 8 weeks have been a nightmare, but he is a trooper and really keeps me upbeat!!! Sometimes I enjoy going to work,,,I have less medications to give and I may get a break!!! Well he has just informed me his medication is complete and he is ready for the next one!! So I woll be going, but will be back soon

 

[pipersmom]

Hi....I am new to this thread, but not the boards. A little background info..I too am an RN. I have been a labor and Delivery nurse for close to 20 years!! I was shocked during my first pregnancy when I was told that I was a CF carrier. My OB assured me that since they started testing a year before not ONE of his patients spouses had also come back a carrier and not to worry...well 2 weeks later I got the call that my DH was also a carrier. Amnio showed no CF. Pregnancy #2 (wanted a 2nd!!) DD is a carrier...then came surprise baby number 3!!! Brian was born 17 months after DD, the sweetest most energetic little boy who happens to suffer from CF. The first 18 months were rough in and out of the hospital until his port was placed. That lasted him for 5 years. It became infected labor day weekend....he was admitted and eventually they removed the port. 5 days after the site became infected, wound opened and new fun started!!! The wound infection was gone, and the wound almost completely healed when the coughing started...very agressive b/c now we have no port and his latest hosptial stay proved he has very bad veins (9 attemps for an IV and they still cpuld not get the line in!!!). Dr sends for an x-ray and he has pneumonia!!!! Now we have a PICC line and he has missed another week of school!!! I think thats 4 weeks so far this year!!

Now to how I found this thread!! We have been to disney numerous times...we actually own in DVC! But I called MAW today b/c Brian wants to go on the new Disney Cruise Ship the Dream. So I started to surf the boards came across this thread and read the story of Piper and was truly touched!!! MAW was faxing the papers to his doctor today and I hope he will get approved. The last 8 weeks have been a nightmare, but he is a trooper and really keeps me upbeat!!! Sometimes I enjoy going to work,,,I have less medications to give and I may get a break!!! Well he has just informed me his medication is complete and he is ready for the next one!! So I woll be going, but will be back soon

Welcome Mary..and thanks for reading. I should explain, I'm not a nurse, that was more part of a chief cook and bottlewasher type of explanation..maybe I should have put a behind that...so hard online sometimes to tell inflections on here. Anyway! I'm glad you found the thread, obviously you know exactly what we're going through right now. One of my biggest fears is Piper's port becoming infected, it's just such a nice change from PICCs and IV's. When she got her port, I had asked about getting her one and was told they prefer not to do it on kids her age. So the next day they try to place a PICC (8 attempts, I was in the room watching and NOT a happy camper by the end) and no luck. The same surgeon came to see me again, and I must say was a bit sheepish when admitting maybe Piper needed a port.

I very much prefer Piper being home rather than at Club Med, it's a lot more work for me, but so much more relaxing in general. I do all her needle changes, etc myself. I know a lot of people use home care, but honestly, I prefer doing it to having strangers in and out of my house and being on their schedule instead of our own. I also think it makes it easier on Piper. Even when she's in hosp, I do her port accessing and changes, per her request. We've had a few nurses get bent out of shape about it, but I really don't care. Okay, enough blabbing from me, lol..will look forward to getting to know you and your 3 better. You may want to swing by the community board, there's a thread just for wish trippers!

Wish Trippers Unite! Volume Two

 

[maroo]

Okay, boring things first..lol..health update...Piper's still doing O2 pretty much 24 hrs a day, the exception being during treatments. After speaking with her Dr about my concerns today, she will not be going back to school until spring. We'll do some combination of homeschool & homebound schooling. I am a bit apprehensive about this because with it being just the two of us, we sometimes drive each other crazy, but healthwise, I know it is the best choice for her right now.

Now for the fun stuff! I got a call from her wish granters today and we're meeting with them Thurs evening..woohoo I know it's going to feel more real after that happens, for me anyway. One of them is actually from my small town, which really surprised me, but I think is so cool I will take some pictures when they're here, and will be sure to update

Halloween went really well..Piper dressed up as Hermione from Harry Potter..she was very cute! ( I don't have pics..bad mommy) We went to a Trunk or Treat event..it was drizzling and we knew that would be relatively quick. What I didn't think about was her costume. I heard several people commenting (seeing the back of her costume) that she was a witch. Now, I know Hermione is technically a witch, but I truly didn't think about it that way..was thinking more of the literary character thing, I guess. At any rate, Piper didn't notice, and no one approached us directly, so I guess it was okay. She got a ton of candy between that and our immediate neighbors, and not too much choccy (which she can't have, and I don't need, lol). So it was a great night, and she loved being able to trick or treat on Halloween!

Thanks all for the continued prayers and positive thoughts

First - the health update - Bless your heart. Still on O2 all day. That is a bummer. I think you made a GREAT decision to keep her home for the winter. Hopefully you guys can find some safe ways to keep her safe and well but also able to hang out with some other folks - as I totally understand getting on each others nerves after a while.

Woo Hoo on the wish granters coming!!!

Hermione! How cool is THAT! You guys have totally got to see the World of Harry Potter at Universal. It isn't open yet...but hopefully it will be by the time you guys get her wish granted!

Still praying for you guys.

Hi....I am new to this thread, but not the boards. A little background info..I too am an RN. I have been a labor and Delivery nurse for close to 20 years!! I was shocked during my first pregnancy when I was told that I was a CF carrier. My OB assured me that since they started testing a year before not ONE of his patients spouses had also come back a carrier and not to worry...well 2 weeks later I got the call that my DH was also a carrier. Amnio showed no CF. Pregnancy #2 (wanted a 2nd!!) DD is a carrier...then came surprise baby number 3!!! Brian was born 17 months after DD, the sweetest most energetic little boy who happens to suffer from CF. The first 18 months were rough in and out of the hospital until his port was placed. That lasted him for 5 years. It became infected labor day weekend....he was admitted and eventually they removed the port. 5 days after the site became infected, wound opened and new fun started!!! The wound infection was gone, and the wound almost completely healed when the coughing started...very agressive b/c now we have no port and his latest hosptial stay proved he has very bad veins (9 attemps for an IV and they still cpuld not get the line in!!!). Dr sends for an x-ray and he has pneumonia!!!! Now we have a PICC line and he has missed another week of school!!! I think thats 4 weeks so far this year!!

Now to how I found this thread!! We have been to disney numerous times...we actually own in DVC! But I called MAW today b/c Brian wants to go on the new Disney Cruise Ship the Dream. So I started to surf the boards came across this thread and read the story of Piper and was truly touched!!! MAW was faxing the papers to his doctor today and I hope he will get approved. The last 8 weeks have been a nightmare, but he is a trooper and really keeps me upbeat!!! Sometimes I enjoy going to work,,,I have less medications to give and I may get a break!!! Well he has just informed me his medication is complete and he is ready for the next one!! So I woll be going, but will be back soon

AWESOME that you found this thread!!

I will PM you...just to make sure you see this. But I want to personally invite you to come join us on the Wish Trippers Thread - we are all over there planning wish trips (both cruises and Disney trips) and would love to have you. We also live life and I have honestly met some lifelong friends over there! Glad you found this thread!

Oh...and my name is Mary but people in real life call me Maroo. I am not a nurse...I do insurance for a medical clinic (oncology) and work as a CNA during the week for 2 different young ladies. I went to NP school at Vanderbilt for one semester and hated it (it was Fall of 2001 and 9/11 made me pretty homesick) - so I just play nurse now.

Welcome Mary..and thanks for reading. I should explain, I'm not a nurse, that was more part of a chief cook and bottlewasher type of explanation..maybe I should have put a behind that...so hard online sometimes to tell inflections on here. Anyway! I'm glad you found the thread, obviously you know exactly what we're going through right now. One of my biggest fears is Piper's port becoming infected, it's just such a nice change from PICCs and IV's. When she got her port, I had asked about getting her one and was told they prefer not to do it on kids her age. So the next day they try to place a PICC (8 attempts, I was in the room watching and NOT a happy camper by the end) and no luck. The same surgeon came to see me again, and I must say was a bit sheepish when admitting maybe Piper needed a port.

I very much prefer Piper being home rather than at Club Med, it's a lot more work for me, but so much more relaxing in general. I do all her needle changes, etc myself. I know a lot of people use home care, but honestly, I prefer doing it to having strangers in and out of my house and being on their schedule instead of our own. I also think it makes it easier on Piper. Even when she's in hosp, I do her port accessing and changes, per her request. We've had a few nurses get bent out of shape about it, but I really don't care. Okay, enough blabbing from me, lol..will look forward to getting to know you and your 3 better. You may want to swing by the community board, there's a thread just for wish trippers!

Wish Trippers Unite! Volume Two

Well...you already gave her the link. You rock!

And you are totally a nurse...maybe not an "RN" - but you are a nurse day in and day out for your precious child.