Zoe4Life Update

zoe4life

New member
Hello to all of our wonderful, caring friends! I have read everyones posts, and can't thank you all enough for your concern, love and prayers!

Went to the cf doc this a.m. They removed her picc!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Her little body has been so ravaged by all the antibiotics, they felt the need to get her off of them for a week or so to try to let everything get back to semi-normal (stools, vaginal infection, throwing up, etc...). When that all settles down, she starts a month of oral Bactrim. As far as her ORSA/MRSA, they explained it to me this way: will we ever get rid of it all? Probably not. We treat it actively when it flares up, causes symptoms. Otherwise, it kind of sits there, waiting until it wants to flare up. Yeah. Oh and I am running a stool sample to the lab in a few minutes, they are just checking for Rotovirus and C-Diff.

We got moved from our clinics "white" team, meaning you culture clean, to the "red" team (not clean cultures) another yeah.<img src="i/expressions/face-icon-small-frown.gif" border="0">

Good news is her cough is pretty much gone as far as I can tell. She was so sick this week that it was hard to tell if it was going away or she was just sleeping so much I couldn't tell. I guess this week will tell all.

She lost 3 pounds of weight that was hard to get on in the first place. Hopefully she will start eating like a little piggie and gain it back!

As far as her sinuses, the ENT is doing Nasonex for a while, with saline washes. He told us, it is pretty inevitable that she will have to have the sinus surgery, but we will try this first, put it off for a bit. And they also started her on Pulmozyme. That stuff is soooo expensive. Thank God for insurance.

I think that is about it!

Again, thank you all for all your encouraging words, it is so nice to know that people care.

P.S. Thank you Lynda and Dakota for the gift we received while in the hospital!!! Zoe loved it!! Thank you Terri for the cards and keeping updated for us!!

Love,
 

zoe4life

New member
Hello to all of our wonderful, caring friends! I have read everyones posts, and can't thank you all enough for your concern, love and prayers!

Went to the cf doc this a.m. They removed her picc!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Her little body has been so ravaged by all the antibiotics, they felt the need to get her off of them for a week or so to try to let everything get back to semi-normal (stools, vaginal infection, throwing up, etc...). When that all settles down, she starts a month of oral Bactrim. As far as her ORSA/MRSA, they explained it to me this way: will we ever get rid of it all? Probably not. We treat it actively when it flares up, causes symptoms. Otherwise, it kind of sits there, waiting until it wants to flare up. Yeah. Oh and I am running a stool sample to the lab in a few minutes, they are just checking for Rotovirus and C-Diff.

We got moved from our clinics "white" team, meaning you culture clean, to the "red" team (not clean cultures) another yeah.<img src="i/expressions/face-icon-small-frown.gif" border="0">

Good news is her cough is pretty much gone as far as I can tell. She was so sick this week that it was hard to tell if it was going away or she was just sleeping so much I couldn't tell. I guess this week will tell all.

She lost 3 pounds of weight that was hard to get on in the first place. Hopefully she will start eating like a little piggie and gain it back!

As far as her sinuses, the ENT is doing Nasonex for a while, with saline washes. He told us, it is pretty inevitable that she will have to have the sinus surgery, but we will try this first, put it off for a bit. And they also started her on Pulmozyme. That stuff is soooo expensive. Thank God for insurance.

I think that is about it!

Again, thank you all for all your encouraging words, it is so nice to know that people care.

P.S. Thank you Lynda and Dakota for the gift we received while in the hospital!!! Zoe loved it!! Thank you Terri for the cards and keeping updated for us!!

Love,
 

zoe4life

New member
Hello to all of our wonderful, caring friends! I have read everyones posts, and can't thank you all enough for your concern, love and prayers!

Went to the cf doc this a.m. They removed her picc!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Her little body has been so ravaged by all the antibiotics, they felt the need to get her off of them for a week or so to try to let everything get back to semi-normal (stools, vaginal infection, throwing up, etc...). When that all settles down, she starts a month of oral Bactrim. As far as her ORSA/MRSA, they explained it to me this way: will we ever get rid of it all? Probably not. We treat it actively when it flares up, causes symptoms. Otherwise, it kind of sits there, waiting until it wants to flare up. Yeah. Oh and I am running a stool sample to the lab in a few minutes, they are just checking for Rotovirus and C-Diff.

We got moved from our clinics "white" team, meaning you culture clean, to the "red" team (not clean cultures) another yeah.<img src="i/expressions/face-icon-small-frown.gif" border="0">

Good news is her cough is pretty much gone as far as I can tell. She was so sick this week that it was hard to tell if it was going away or she was just sleeping so much I couldn't tell. I guess this week will tell all.

She lost 3 pounds of weight that was hard to get on in the first place. Hopefully she will start eating like a little piggie and gain it back!

As far as her sinuses, the ENT is doing Nasonex for a while, with saline washes. He told us, it is pretty inevitable that she will have to have the sinus surgery, but we will try this first, put it off for a bit. And they also started her on Pulmozyme. That stuff is soooo expensive. Thank God for insurance.

I think that is about it!

Again, thank you all for all your encouraging words, it is so nice to know that people care.

P.S. Thank you Lynda and Dakota for the gift we received while in the hospital!!! Zoe loved it!! Thank you Terri for the cards and keeping updated for us!!

Love,
 

LouLou

New member
I'm so glad to hear Zoe and you are home safe and sound. I hope you can resume life as usual very soon.
 

LouLou

New member
I'm so glad to hear Zoe and you are home safe and sound. I hope you can resume life as usual very soon.
 

LouLou

New member
I'm so glad to hear Zoe and you are home safe and sound. I hope you can resume life as usual very soon.
 

kayleesgrandma

New member
Well, you know how I feel about you all and our little Zoe-! I hope she is able to eat more now--did the doctors give you something for her upset stomach? For her stools? I hope you will be able to get some rest and some margaritas! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 

kayleesgrandma

New member
Well, you know how I feel about you all and our little Zoe-! I hope she is able to eat more now--did the doctors give you something for her upset stomach? For her stools? I hope you will be able to get some rest and some margaritas! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 

kayleesgrandma

New member
Well, you know how I feel about you all and our little Zoe-! I hope she is able to eat more now--did the doctors give you something for her upset stomach? For her stools? I hope you will be able to get some rest and some margaritas! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 

Landy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>zoe4life</b></i>

P.S. Zoe received a package from a lady and her daughter while in the hospital, Lynda and Dakata. If anyone knows her, or if she is reading this, please let me know who she is, we would like to thank her as well.

Love,</end quote></div>

**raises hand**
That's me & Dakota is my daughter (no CF).
I saw Zoe's hospital address on here and thought I'd send a little care package since it was her first hospital stay and all....
I'm glad she's home & is doing well and hope that she is feeling back to her old (well, young) self soon!
Thanks for the update<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Landy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>zoe4life</b></i>

P.S. Zoe received a package from a lady and her daughter while in the hospital, Lynda and Dakata. If anyone knows her, or if she is reading this, please let me know who she is, we would like to thank her as well.

Love,</end quote></div>

**raises hand**
That's me & Dakota is my daughter (no CF).
I saw Zoe's hospital address on here and thought I'd send a little care package since it was her first hospital stay and all....
I'm glad she's home & is doing well and hope that she is feeling back to her old (well, young) self soon!
Thanks for the update<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Landy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>zoe4life</b></i>

P.S. Zoe received a package from a lady and her daughter while in the hospital, Lynda and Dakata. If anyone knows her, or if she is reading this, please let me know who she is, we would like to thank her as well.

Love,</end quote></div>

**raises hand**
That's me & Dakota is my daughter (no CF).
I saw Zoe's hospital address on here and thought I'd send a little care package since it was her first hospital stay and all....
I'm glad she's home & is doing well and hope that she is feeling back to her old (well, young) self soon!
Thanks for the update<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

beleache

New member
So Glad to hear Zoe is home, hope and pray that she will be feeling better soon !!!God Bless you guys, you have all been through so much... Joni 55 y/o f w c/f
 

beleache

New member
So Glad to hear Zoe is home, hope and pray that she will be feeling better soon !!!God Bless you guys, you have all been through so much... Joni 55 y/o f w c/f
 

beleache

New member
So Glad to hear Zoe is home, hope and pray that she will be feeling better soon !!!God Bless you guys, you have all been through so much... Joni 55 y/o f w c/f
 

izemmom

New member
I read your post and I could just feel the exhaustion mixed with relief (to be home , at least) that you must be feeling right now. actually, I want to cry thinking about what you guys went through. I know what you mean about losing those hard-earned pounds. Emily just keeps yo-yoing the same two or three pounds back and forth. Get a few good night's rest in your own beds. I am thinking of you and wishing Zoe good and hungry thoughts. Take care of you, too, Jada!
 

izemmom

New member
I read your post and I could just feel the exhaustion mixed with relief (to be home , at least) that you must be feeling right now. actually, I want to cry thinking about what you guys went through. I know what you mean about losing those hard-earned pounds. Emily just keeps yo-yoing the same two or three pounds back and forth. Get a few good night's rest in your own beds. I am thinking of you and wishing Zoe good and hungry thoughts. Take care of you, too, Jada!
 
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