We're back from evaluation

K

karismom

New member
hi risa!

glad to hear from you. kari is doing ok right now the accupuncture helped her out alot. she hasn't done it for awhile tho but is going to again soon. i will write more soon and fill ya in on whats goin on. hope you are well. take care.

lisa <img src="i/expressions/rose.gif" border="0">
 
M

madisonsmom

New member
Lisa,
Sorry about that, had you heard of this woman from the madison, wi. area hospital?

I haven't heard from Liza, I worry. It sounded like Anna was still trying to get well enough to travel to stanford

Maddy is holding her own for now.. she seemed to actually make it through a cold. That is, not needing to go into the hosp for IV antibx. I think... I never know when CF will rear it's ugly head and ruin more of her life. I am just thankful for a few weeks of health.... if you can call it that.

I'm glad Kari is ok.

Kathy
 
M

madisonsmom

New member
Lisa,
Sorry about that, had you heard of this woman from the madison, wi. area hospital?

I haven't heard from Liza, I worry. It sounded like Anna was still trying to get well enough to travel to stanford

Maddy is holding her own for now.. she seemed to actually make it through a cold. That is, not needing to go into the hosp for IV antibx. I think... I never know when CF will rear it's ugly head and ruin more of her life. I am just thankful for a few weeks of health.... if you can call it that.

I'm glad Kari is ok.

Kathy
 
M

madisonsmom

New member
Lisa,
Sorry about that, had you heard of this woman from the madison, wi. area hospital?

I haven't heard from Liza, I worry. It sounded like Anna was still trying to get well enough to travel to stanford

Maddy is holding her own for now.. she seemed to actually make it through a cold. That is, not needing to go into the hosp for IV antibx. I think... I never know when CF will rear it's ugly head and ruin more of her life. I am just thankful for a few weeks of health.... if you can call it that.

I'm glad Kari is ok.

Kathy
 
K

karismom

New member
hi kathy,

i am very glad that madison is doing well (if not just for today). i TOTALLY know what you mean about cf rearing its UGLY, EVIL head. it is totally our arch ENEMY. i truly believe that it is worse in alot of ways even over cancer. at least with cancer you pretty much know whats gonna happen ya know! cf is sneaky and cunning and always surprises you when you let your guard down. anyway...... YES we did already know about joan mccarville. its very sad that she passed. BUT marg pratt is still alive an doin well! so that's a GOOD thing. i hope that anna is ok. i will write again soon. take care.


lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
hi kathy,

i am very glad that madison is doing well (if not just for today). i TOTALLY know what you mean about cf rearing its UGLY, EVIL head. it is totally our arch ENEMY. i truly believe that it is worse in alot of ways even over cancer. at least with cancer you pretty much know whats gonna happen ya know! cf is sneaky and cunning and always surprises you when you let your guard down. anyway...... YES we did already know about joan mccarville. its very sad that she passed. BUT marg pratt is still alive an doin well! so that's a GOOD thing. i hope that anna is ok. i will write again soon. take care.


lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
hi kathy,

i am very glad that madison is doing well (if not just for today). i TOTALLY know what you mean about cf rearing its UGLY, EVIL head. it is totally our arch ENEMY. i truly believe that it is worse in alot of ways even over cancer. at least with cancer you pretty much know whats gonna happen ya know! cf is sneaky and cunning and always surprises you when you let your guard down. anyway...... YES we did already know about joan mccarville. its very sad that she passed. BUT marg pratt is still alive an doin well! so that's a GOOD thing. i hope that anna is ok. i will write again soon. take care.


lisa <img src="i/expressions/rose.gif" border="0">
 
L

Liza

New member
Hi Ya'll. Well so much you know what has gone on. You know we didn't make it to Stanford and she was admitted here in horribl'e pain. Well thay seemed to have that under "control" while she was in. Morphine and Percecet. Her pft's not having changed when they did them friday, 27 fev1. She was still hurting but it was managed. They let her out on friday at 5pm. I drove her home and left her here with my other daughter and left to get her pain script filled only to find out that the doc hadn't put it on the proper script pad. The one for narcotics. "luckily" he happened to be on call. Seems he didn't have "that" kind of script pad. My husband says it's a triplicate script pad. I had to ask him what was I supposed to do? Anyhow, after talking with the pharmacist they decided on vicadin. We've had a hard time getting it all leveled. She was in alot of pain last night and we seriously thought we might have to take her back in. She was worried she would never get out. She felt well enough to go to a baby shower today though. She had a pretty enjoyable day. She's got to get a tooth filled tomorrow and she's scheduled to fly out with her dad on wed. I am going to fly out on friday. So at this moment she is doing"ok". Thanks so much for being here. You mentioned once that this was your therapy. Mine too.

I am so glad to hear that Maddy is holding her own and not had to go back on IV antibiotics. I agree with both of ya'll, we never know what to expect from one day to the next. That is what is so darn frustrating. One day can be "great" or at least good and then horrible the next. All of this just seems to have come on over night, or so it feels like it. She was doing great when she got her port and went almost two years before needing IV antibiotics. That was her senior year. Then in the fall it all went down hill and here we are almost 2 yrs later.

Lisa, how's Kari doing? She has an appt. in SF next month right? SF also does transplants? I just don't know all the centers that do transplants.

Well I'd better get going. I need to look and see if I can find a pattern for hospital gowns. Anna wants me to make hers in NE colors and so that they will fit instead of falling off.
 
L

Liza

New member
Hi Ya'll. Well so much you know what has gone on. You know we didn't make it to Stanford and she was admitted here in horribl'e pain. Well thay seemed to have that under "control" while she was in. Morphine and Percecet. Her pft's not having changed when they did them friday, 27 fev1. She was still hurting but it was managed. They let her out on friday at 5pm. I drove her home and left her here with my other daughter and left to get her pain script filled only to find out that the doc hadn't put it on the proper script pad. The one for narcotics. "luckily" he happened to be on call. Seems he didn't have "that" kind of script pad. My husband says it's a triplicate script pad. I had to ask him what was I supposed to do? Anyhow, after talking with the pharmacist they decided on vicadin. We've had a hard time getting it all leveled. She was in alot of pain last night and we seriously thought we might have to take her back in. She was worried she would never get out. She felt well enough to go to a baby shower today though. She had a pretty enjoyable day. She's got to get a tooth filled tomorrow and she's scheduled to fly out with her dad on wed. I am going to fly out on friday. So at this moment she is doing"ok". Thanks so much for being here. You mentioned once that this was your therapy. Mine too.

I am so glad to hear that Maddy is holding her own and not had to go back on IV antibiotics. I agree with both of ya'll, we never know what to expect from one day to the next. That is what is so darn frustrating. One day can be "great" or at least good and then horrible the next. All of this just seems to have come on over night, or so it feels like it. She was doing great when she got her port and went almost two years before needing IV antibiotics. That was her senior year. Then in the fall it all went down hill and here we are almost 2 yrs later.

Lisa, how's Kari doing? She has an appt. in SF next month right? SF also does transplants? I just don't know all the centers that do transplants.

Well I'd better get going. I need to look and see if I can find a pattern for hospital gowns. Anna wants me to make hers in NE colors and so that they will fit instead of falling off.
 
L

Liza

New member
Hi Ya'll. Well so much you know what has gone on. You know we didn't make it to Stanford and she was admitted here in horribl'e pain. Well thay seemed to have that under "control" while she was in. Morphine and Percecet. Her pft's not having changed when they did them friday, 27 fev1. She was still hurting but it was managed. They let her out on friday at 5pm. I drove her home and left her here with my other daughter and left to get her pain script filled only to find out that the doc hadn't put it on the proper script pad. The one for narcotics. "luckily" he happened to be on call. Seems he didn't have "that" kind of script pad. My husband says it's a triplicate script pad. I had to ask him what was I supposed to do? Anyhow, after talking with the pharmacist they decided on vicadin. We've had a hard time getting it all leveled. She was in alot of pain last night and we seriously thought we might have to take her back in. She was worried she would never get out. She felt well enough to go to a baby shower today though. She had a pretty enjoyable day. She's got to get a tooth filled tomorrow and she's scheduled to fly out with her dad on wed. I am going to fly out on friday. So at this moment she is doing"ok". Thanks so much for being here. You mentioned once that this was your therapy. Mine too.

I am so glad to hear that Maddy is holding her own and not had to go back on IV antibiotics. I agree with both of ya'll, we never know what to expect from one day to the next. That is what is so darn frustrating. One day can be "great" or at least good and then horrible the next. All of this just seems to have come on over night, or so it feels like it. She was doing great when she got her port and went almost two years before needing IV antibiotics. That was her senior year. Then in the fall it all went down hill and here we are almost 2 yrs later.

Lisa, how's Kari doing? She has an appt. in SF next month right? SF also does transplants? I just don't know all the centers that do transplants.

Well I'd better get going. I need to look and see if I can find a pattern for hospital gowns. Anna wants me to make hers in NE colors and so that they will fit instead of falling off.
 
B

Breezy

New member
Wow i've been reading this thread for a while and i must say bless all your families and everything you're going through. My lungs are crap enough and i can't imagine how your daughters are feeling. All i can say is that i wish all of you the best and may nothing but love come your way. Thank you for your updates!!!! You're all in my prayers!!!
 
B

Breezy

New member
Wow i've been reading this thread for a while and i must say bless all your families and everything you're going through. My lungs are crap enough and i can't imagine how your daughters are feeling. All i can say is that i wish all of you the best and may nothing but love come your way. Thank you for your updates!!!! You're all in my prayers!!!
 
B

Breezy

New member
Wow i've been reading this thread for a while and i must say bless all your families and everything you're going through. My lungs are crap enough and i can't imagine how your daughters are feeling. All i can say is that i wish all of you the best and may nothing but love come your way. Thank you for your updates!!!! You're all in my prayers!!!
 
K

karismom

New member
liza,

i am SO SO SAD to hear about anna. oh my gosh. bless her heart. i feel so bad for you guys cuz i have been there and it is so hard. so is she officially on the list now? you have probably said one way or another and i apologize for not remembering. kari is not feeling well AT ALL the past few days. mayahs (her daughter) fifth b day was last week and she had a party at chuck e cheese and it wore her out totally. its so upsetting. BUT, she went and took her GED pretests (she was too sick to graduate high school) and passed w/ flying colors!!! so we are VERY proud of her for that. i am at the end of my rope w/ the docs. so, yes we have an appt on the 26 to find out what if anything they are going to do for her and are ALL very stressed out at this point. i will write later and update. my prayers are with you ALL, and i will be anxiously awaiting to hear how it is going.

kathy hope that madison is ok and and praying for her as well.

take care.

lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
liza,

i am SO SO SAD to hear about anna. oh my gosh. bless her heart. i feel so bad for you guys cuz i have been there and it is so hard. so is she officially on the list now? you have probably said one way or another and i apologize for not remembering. kari is not feeling well AT ALL the past few days. mayahs (her daughter) fifth b day was last week and she had a party at chuck e cheese and it wore her out totally. its so upsetting. BUT, she went and took her GED pretests (she was too sick to graduate high school) and passed w/ flying colors!!! so we are VERY proud of her for that. i am at the end of my rope w/ the docs. so, yes we have an appt on the 26 to find out what if anything they are going to do for her and are ALL very stressed out at this point. i will write later and update. my prayers are with you ALL, and i will be anxiously awaiting to hear how it is going.

kathy hope that madison is ok and and praying for her as well.

take care.

lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
liza,

i am SO SO SAD to hear about anna. oh my gosh. bless her heart. i feel so bad for you guys cuz i have been there and it is so hard. so is she officially on the list now? you have probably said one way or another and i apologize for not remembering. kari is not feeling well AT ALL the past few days. mayahs (her daughter) fifth b day was last week and she had a party at chuck e cheese and it wore her out totally. its so upsetting. BUT, she went and took her GED pretests (she was too sick to graduate high school) and passed w/ flying colors!!! so we are VERY proud of her for that. i am at the end of my rope w/ the docs. so, yes we have an appt on the 26 to find out what if anything they are going to do for her and are ALL very stressed out at this point. i will write later and update. my prayers are with you ALL, and i will be anxiously awaiting to hear how it is going.

kathy hope that madison is ok and and praying for her as well.

take care.

lisa <img src="i/expressions/rose.gif" border="0">
 
M

madisonsmom

New member
Hello, my comrades in life....

I'm with you in spirit, I feel your pain. Liza and Lisa you're so in my heart right now. Tears are running down my face as I try to type.
I wish, as we all do, that I could fix it. Liza, what a sweet mom you are to make a hospital gown for Anna. Anything to make her life some what better.
Lisa, It must break your heart to see your daughter try so hard to provide a simple B day party for her daughter as any mother would, and then watch how it drains her energy. Your pain in watching your Keri try to be a mom must break your heart. Thank god you are there for her.. for both. Both you and Liza amaze me at your ability to do this for 2 daughters.

I'm still amazed at the strength of character you both have, I know it's demonstated all over this web site by others but my focus right now is you two. I'm feeling guilty, and amazed that Maddy has been "healthy"" for another week.
Her highlight of the week was getting a new vest for physio. She is so excited that it's lighter and it had wheels. Her boyfriend tries to share her excitment with a comment "Niiiiice" , a little smirk on his face. It 's how life happens around here.

We think we will get the appt w/ in a few weeks as Julie, Maddy's MD, says she's almost ready. Im thinking we will be turned down as she's holding her own for now. Her PFTs were 34% last week. Sats are staying up there. She went to her friends house for dinner and said she did well( not hacking all the time) We've known this family since the girls were 4 and started kindergarden together, so they are well aware of Maddy's plight.

I am probably going to another funeral soon, my uncle is on a vent and failing fast. I have been very close to him all my life and look at him as a father. He's my dads younger brother, my dad is taking it very hard. It's hard to see my father in so much pain as he ften spoke of how he felt like his protector when they were young.

I feel better just writng these things down... I'm not crying any more. I will continue to keep you both in my heart and think about you all the time. <img src="i/expressions/heart.gif" border="0">


Take care,
kathy
 
M

madisonsmom

New member
Hello, my comrades in life....

I'm with you in spirit, I feel your pain. Liza and Lisa you're so in my heart right now. Tears are running down my face as I try to type.
I wish, as we all do, that I could fix it. Liza, what a sweet mom you are to make a hospital gown for Anna. Anything to make her life some what better.
Lisa, It must break your heart to see your daughter try so hard to provide a simple B day party for her daughter as any mother would, and then watch how it drains her energy. Your pain in watching your Keri try to be a mom must break your heart. Thank god you are there for her.. for both. Both you and Liza amaze me at your ability to do this for 2 daughters.

I'm still amazed at the strength of character you both have, I know it's demonstated all over this web site by others but my focus right now is you two. I'm feeling guilty, and amazed that Maddy has been "healthy"" for another week.
Her highlight of the week was getting a new vest for physio. She is so excited that it's lighter and it had wheels. Her boyfriend tries to share her excitment with a comment "Niiiiice" , a little smirk on his face. It 's how life happens around here.

We think we will get the appt w/ in a few weeks as Julie, Maddy's MD, says she's almost ready. Im thinking we will be turned down as she's holding her own for now. Her PFTs were 34% last week. Sats are staying up there. She went to her friends house for dinner and said she did well( not hacking all the time) We've known this family since the girls were 4 and started kindergarden together, so they are well aware of Maddy's plight.

I am probably going to another funeral soon, my uncle is on a vent and failing fast. I have been very close to him all my life and look at him as a father. He's my dads younger brother, my dad is taking it very hard. It's hard to see my father in so much pain as he ften spoke of how he felt like his protector when they were young.

I feel better just writng these things down... I'm not crying any more. I will continue to keep you both in my heart and think about you all the time. <img src="i/expressions/heart.gif" border="0">


Take care,
kathy
 
M

madisonsmom

New member
Hello, my comrades in life....

I'm with you in spirit, I feel your pain. Liza and Lisa you're so in my heart right now. Tears are running down my face as I try to type.
I wish, as we all do, that I could fix it. Liza, what a sweet mom you are to make a hospital gown for Anna. Anything to make her life some what better.
Lisa, It must break your heart to see your daughter try so hard to provide a simple B day party for her daughter as any mother would, and then watch how it drains her energy. Your pain in watching your Keri try to be a mom must break your heart. Thank god you are there for her.. for both. Both you and Liza amaze me at your ability to do this for 2 daughters.

I'm still amazed at the strength of character you both have, I know it's demonstated all over this web site by others but my focus right now is you two. I'm feeling guilty, and amazed that Maddy has been "healthy"" for another week.
Her highlight of the week was getting a new vest for physio. She is so excited that it's lighter and it had wheels. Her boyfriend tries to share her excitment with a comment "Niiiiice" , a little smirk on his face. It 's how life happens around here.

We think we will get the appt w/ in a few weeks as Julie, Maddy's MD, says she's almost ready. Im thinking we will be turned down as she's holding her own for now. Her PFTs were 34% last week. Sats are staying up there. She went to her friends house for dinner and said she did well( not hacking all the time) We've known this family since the girls were 4 and started kindergarden together, so they are well aware of Maddy's plight.

I am probably going to another funeral soon, my uncle is on a vent and failing fast. I have been very close to him all my life and look at him as a father. He's my dads younger brother, my dad is taking it very hard. It's hard to see my father in so much pain as he ften spoke of how he felt like his protector when they were young.

I feel better just writng these things down... I'm not crying any more. I will continue to keep you both in my heart and think about you all the time. <img src="i/expressions/heart.gif" border="0">


Take care,
kathy
 
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