shes gone down to 21% and they still wont list her? gah! dont they realise that if she got a cold or pneumonia at 21% that could be the end? i hear what you are saying about not wanting her to bounce back too far and i dont blame you for feeling that way. i wish i had answers for you. hopefully someone else may be able to help. whilst im not near transplant stage yet, im heading that way soon and i fear that i will be in the exact same situation as your daughter when the time comes. at the moment i am going up and down from 35% to 50% [up and down up and down its neverending] and i practically live on iv's. not much fun knowing that iv's are the only thing keeping you alive <img src="i/expressions/face-icon-small-sad.gif" border="0">
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We're back from evaluation
- Thread starter Liza
- Start date
shes gone down to 21% and they still wont list her? gah! dont they realise that if she got a cold or pneumonia at 21% that could be the end? i hear what you are saying about not wanting her to bounce back too far and i dont blame you for feeling that way. i wish i had answers for you. hopefully someone else may be able to help. whilst im not near transplant stage yet, im heading that way soon and i fear that i will be in the exact same situation as your daughter when the time comes. at the moment i am going up and down from 35% to 50% [up and down up and down its neverending] and i practically live on iv's. not much fun knowing that iv's are the only thing keeping you alive <img src="i/expressions/face-icon-small-sad.gif" border="0">
shes gone down to 21% and they still wont list her? gah! dont they realise that if she got a cold or pneumonia at 21% that could be the end? i hear what you are saying about not wanting her to bounce back too far and i dont blame you for feeling that way. i wish i had answers for you. hopefully someone else may be able to help. whilst im not near transplant stage yet, im heading that way soon and i fear that i will be in the exact same situation as your daughter when the time comes. at the moment i am going up and down from 35% to 50% [up and down up and down its neverending] and i practically live on iv's. not much fun knowing that iv's are the only thing keeping you alive <img src="i/expressions/face-icon-small-sad.gif" border="0">
madisonsmom
New member
Liza,
The more you write the more our girls seem alike. This living 2weeks on 1-2 off antibiotics has been going on for about the last 6-8 months. We used to get about 3 months off. We also have a pulse ox at home which is a life saver. My daughter went on O2 the 26th of Dec as she was feeling droopy. We wanted to hold out for a few days as we were going to meet my family a couple of hours away. They flew in for my older brother's 50th. We went with oxygen intow along with all of the other equipment. She barely made the trip, but true to her form she never wants to say how bad she's feeling. We got home on the 31st and by the 1st she was on 4L sats 90. We had to be admited through the ER, as the clinics were closed. With in 2-3 days she was off the O2 during the day. She's now home on IV abx feeling good. When she left the hospital her Fev1 was still in the lo 20's. I think she's actually starting to like being on abx as that's the only time she feels well. It's true this is not a quality way toive your life.
This issue with the "inactive" status is confusing to me also. As I said before I'm getting different answers. She is listed only at the childrens hospital which is a diferent hospital system than the adult hospital but the MDs all work for the same medical college?? I think if I pushed the issue she could get reactivated at CHW, course then they would probably make her go to the adult hospital for post trans care!!Confusing, I know. I really am fighting a loosing battle. I do think we will be better off leaving this system. It's extremely anxiety producing, but we already have had to leave all of our MDs at the childrens hospital except for the pulmonologist. I was trying to avoid saying the name of where we live ,I guess I was afraid that somehow this would hurt our chances of good care. It really doesn't seem to matter though. We live outside of Milw, Wi and receive our care at the Medical College of Wi. We are going to go to The University Hospital of Wisconsin Medical center in Madison for the transplant eval, Their outcomestats are good. Now we are having trouble getting her records sent there, I guess I'm not surprised.
As far as transitioning over a few years .. it didn't happen. Maddy (like your daughter)was told that she wasn't ready to go to the ault center until she was 20. I truely thought there would have be some kind of communication between the 2 centers, and the MDs, but all of a suddenwe were at our 1st admit to the adult care hospital and nobody new anything.
Liza, where are you refering to "NE,UNMC" ? I thank you for sharing your thoughts with me. You too, Kybert. (your quotes are right on)It somehow gives me some sence of validation to hear about you and your daughters. It must be so hard foryou having 2 children with CF. How far away are your 2 medical centers?
thanks again
kathy
The more you write the more our girls seem alike. This living 2weeks on 1-2 off antibiotics has been going on for about the last 6-8 months. We used to get about 3 months off. We also have a pulse ox at home which is a life saver. My daughter went on O2 the 26th of Dec as she was feeling droopy. We wanted to hold out for a few days as we were going to meet my family a couple of hours away. They flew in for my older brother's 50th. We went with oxygen intow along with all of the other equipment. She barely made the trip, but true to her form she never wants to say how bad she's feeling. We got home on the 31st and by the 1st she was on 4L sats 90. We had to be admited through the ER, as the clinics were closed. With in 2-3 days she was off the O2 during the day. She's now home on IV abx feeling good. When she left the hospital her Fev1 was still in the lo 20's. I think she's actually starting to like being on abx as that's the only time she feels well. It's true this is not a quality way toive your life.
This issue with the "inactive" status is confusing to me also. As I said before I'm getting different answers. She is listed only at the childrens hospital which is a diferent hospital system than the adult hospital but the MDs all work for the same medical college?? I think if I pushed the issue she could get reactivated at CHW, course then they would probably make her go to the adult hospital for post trans care!!Confusing, I know. I really am fighting a loosing battle. I do think we will be better off leaving this system. It's extremely anxiety producing, but we already have had to leave all of our MDs at the childrens hospital except for the pulmonologist. I was trying to avoid saying the name of where we live ,I guess I was afraid that somehow this would hurt our chances of good care. It really doesn't seem to matter though. We live outside of Milw, Wi and receive our care at the Medical College of Wi. We are going to go to The University Hospital of Wisconsin Medical center in Madison for the transplant eval, Their outcomestats are good. Now we are having trouble getting her records sent there, I guess I'm not surprised.
As far as transitioning over a few years .. it didn't happen. Maddy (like your daughter)was told that she wasn't ready to go to the ault center until she was 20. I truely thought there would have be some kind of communication between the 2 centers, and the MDs, but all of a suddenwe were at our 1st admit to the adult care hospital and nobody new anything.
Liza, where are you refering to "NE,UNMC" ? I thank you for sharing your thoughts with me. You too, Kybert. (your quotes are right on)It somehow gives me some sence of validation to hear about you and your daughters. It must be so hard foryou having 2 children with CF. How far away are your 2 medical centers?
thanks again
kathy
madisonsmom
New member
Liza,
The more you write the more our girls seem alike. This living 2weeks on 1-2 off antibiotics has been going on for about the last 6-8 months. We used to get about 3 months off. We also have a pulse ox at home which is a life saver. My daughter went on O2 the 26th of Dec as she was feeling droopy. We wanted to hold out for a few days as we were going to meet my family a couple of hours away. They flew in for my older brother's 50th. We went with oxygen intow along with all of the other equipment. She barely made the trip, but true to her form she never wants to say how bad she's feeling. We got home on the 31st and by the 1st she was on 4L sats 90. We had to be admited through the ER, as the clinics were closed. With in 2-3 days she was off the O2 during the day. She's now home on IV abx feeling good. When she left the hospital her Fev1 was still in the lo 20's. I think she's actually starting to like being on abx as that's the only time she feels well. It's true this is not a quality way toive your life.
This issue with the "inactive" status is confusing to me also. As I said before I'm getting different answers. She is listed only at the childrens hospital which is a diferent hospital system than the adult hospital but the MDs all work for the same medical college?? I think if I pushed the issue she could get reactivated at CHW, course then they would probably make her go to the adult hospital for post trans care!!Confusing, I know. I really am fighting a loosing battle. I do think we will be better off leaving this system. It's extremely anxiety producing, but we already have had to leave all of our MDs at the childrens hospital except for the pulmonologist. I was trying to avoid saying the name of where we live ,I guess I was afraid that somehow this would hurt our chances of good care. It really doesn't seem to matter though. We live outside of Milw, Wi and receive our care at the Medical College of Wi. We are going to go to The University Hospital of Wisconsin Medical center in Madison for the transplant eval, Their outcomestats are good. Now we are having trouble getting her records sent there, I guess I'm not surprised.
As far as transitioning over a few years .. it didn't happen. Maddy (like your daughter)was told that she wasn't ready to go to the ault center until she was 20. I truely thought there would have be some kind of communication between the 2 centers, and the MDs, but all of a suddenwe were at our 1st admit to the adult care hospital and nobody new anything.
Liza, where are you refering to "NE,UNMC" ? I thank you for sharing your thoughts with me. You too, Kybert. (your quotes are right on)It somehow gives me some sence of validation to hear about you and your daughters. It must be so hard foryou having 2 children with CF. How far away are your 2 medical centers?
thanks again
kathy
The more you write the more our girls seem alike. This living 2weeks on 1-2 off antibiotics has been going on for about the last 6-8 months. We used to get about 3 months off. We also have a pulse ox at home which is a life saver. My daughter went on O2 the 26th of Dec as she was feeling droopy. We wanted to hold out for a few days as we were going to meet my family a couple of hours away. They flew in for my older brother's 50th. We went with oxygen intow along with all of the other equipment. She barely made the trip, but true to her form she never wants to say how bad she's feeling. We got home on the 31st and by the 1st she was on 4L sats 90. We had to be admited through the ER, as the clinics were closed. With in 2-3 days she was off the O2 during the day. She's now home on IV abx feeling good. When she left the hospital her Fev1 was still in the lo 20's. I think she's actually starting to like being on abx as that's the only time she feels well. It's true this is not a quality way toive your life.
This issue with the "inactive" status is confusing to me also. As I said before I'm getting different answers. She is listed only at the childrens hospital which is a diferent hospital system than the adult hospital but the MDs all work for the same medical college?? I think if I pushed the issue she could get reactivated at CHW, course then they would probably make her go to the adult hospital for post trans care!!Confusing, I know. I really am fighting a loosing battle. I do think we will be better off leaving this system. It's extremely anxiety producing, but we already have had to leave all of our MDs at the childrens hospital except for the pulmonologist. I was trying to avoid saying the name of where we live ,I guess I was afraid that somehow this would hurt our chances of good care. It really doesn't seem to matter though. We live outside of Milw, Wi and receive our care at the Medical College of Wi. We are going to go to The University Hospital of Wisconsin Medical center in Madison for the transplant eval, Their outcomestats are good. Now we are having trouble getting her records sent there, I guess I'm not surprised.
As far as transitioning over a few years .. it didn't happen. Maddy (like your daughter)was told that she wasn't ready to go to the ault center until she was 20. I truely thought there would have be some kind of communication between the 2 centers, and the MDs, but all of a suddenwe were at our 1st admit to the adult care hospital and nobody new anything.
Liza, where are you refering to "NE,UNMC" ? I thank you for sharing your thoughts with me. You too, Kybert. (your quotes are right on)It somehow gives me some sence of validation to hear about you and your daughters. It must be so hard foryou having 2 children with CF. How far away are your 2 medical centers?
thanks again
kathy
madisonsmom
New member
Liza,
The more you write the more our girls seem alike. This living 2weeks on 1-2 off antibiotics has been going on for about the last 6-8 months. We used to get about 3 months off. We also have a pulse ox at home which is a life saver. My daughter went on O2 the 26th of Dec as she was feeling droopy. We wanted to hold out for a few days as we were going to meet my family a couple of hours away. They flew in for my older brother's 50th. We went with oxygen intow along with all of the other equipment. She barely made the trip, but true to her form she never wants to say how bad she's feeling. We got home on the 31st and by the 1st she was on 4L sats 90. We had to be admited through the ER, as the clinics were closed. With in 2-3 days she was off the O2 during the day. She's now home on IV abx feeling good. When she left the hospital her Fev1 was still in the lo 20's. I think she's actually starting to like being on abx as that's the only time she feels well. It's true this is not a quality way toive your life.
This issue with the "inactive" status is confusing to me also. As I said before I'm getting different answers. She is listed only at the childrens hospital which is a diferent hospital system than the adult hospital but the MDs all work for the same medical college?? I think if I pushed the issue she could get reactivated at CHW, course then they would probably make her go to the adult hospital for post trans care!!Confusing, I know. I really am fighting a loosing battle. I do think we will be better off leaving this system. It's extremely anxiety producing, but we already have had to leave all of our MDs at the childrens hospital except for the pulmonologist. I was trying to avoid saying the name of where we live ,I guess I was afraid that somehow this would hurt our chances of good care. It really doesn't seem to matter though. We live outside of Milw, Wi and receive our care at the Medical College of Wi. We are going to go to The University Hospital of Wisconsin Medical center in Madison for the transplant eval, Their outcomestats are good. Now we are having trouble getting her records sent there, I guess I'm not surprised.
As far as transitioning over a few years .. it didn't happen. Maddy (like your daughter)was told that she wasn't ready to go to the ault center until she was 20. I truely thought there would have be some kind of communication between the 2 centers, and the MDs, but all of a suddenwe were at our 1st admit to the adult care hospital and nobody new anything.
Liza, where are you refering to "NE,UNMC" ? I thank you for sharing your thoughts with me. You too, Kybert. (your quotes are right on)It somehow gives me some sence of validation to hear about you and your daughters. It must be so hard foryou having 2 children with CF. How far away are your 2 medical centers?
thanks again
kathy
The more you write the more our girls seem alike. This living 2weeks on 1-2 off antibiotics has been going on for about the last 6-8 months. We used to get about 3 months off. We also have a pulse ox at home which is a life saver. My daughter went on O2 the 26th of Dec as she was feeling droopy. We wanted to hold out for a few days as we were going to meet my family a couple of hours away. They flew in for my older brother's 50th. We went with oxygen intow along with all of the other equipment. She barely made the trip, but true to her form she never wants to say how bad she's feeling. We got home on the 31st and by the 1st she was on 4L sats 90. We had to be admited through the ER, as the clinics were closed. With in 2-3 days she was off the O2 during the day. She's now home on IV abx feeling good. When she left the hospital her Fev1 was still in the lo 20's. I think she's actually starting to like being on abx as that's the only time she feels well. It's true this is not a quality way toive your life.
This issue with the "inactive" status is confusing to me also. As I said before I'm getting different answers. She is listed only at the childrens hospital which is a diferent hospital system than the adult hospital but the MDs all work for the same medical college?? I think if I pushed the issue she could get reactivated at CHW, course then they would probably make her go to the adult hospital for post trans care!!Confusing, I know. I really am fighting a loosing battle. I do think we will be better off leaving this system. It's extremely anxiety producing, but we already have had to leave all of our MDs at the childrens hospital except for the pulmonologist. I was trying to avoid saying the name of where we live ,I guess I was afraid that somehow this would hurt our chances of good care. It really doesn't seem to matter though. We live outside of Milw, Wi and receive our care at the Medical College of Wi. We are going to go to The University Hospital of Wisconsin Medical center in Madison for the transplant eval, Their outcomestats are good. Now we are having trouble getting her records sent there, I guess I'm not surprised.
As far as transitioning over a few years .. it didn't happen. Maddy (like your daughter)was told that she wasn't ready to go to the ault center until she was 20. I truely thought there would have be some kind of communication between the 2 centers, and the MDs, but all of a suddenwe were at our 1st admit to the adult care hospital and nobody new anything.
Liza, where are you refering to "NE,UNMC" ? I thank you for sharing your thoughts with me. You too, Kybert. (your quotes are right on)It somehow gives me some sence of validation to hear about you and your daughters. It must be so hard foryou having 2 children with CF. How far away are your 2 medical centers?
thanks again
kathy
Hi again, Bear with me here if this gets all messed up. My husband left on a business trip this AM and I'm back to using the dial up connection as his laptop with the wireless card is with him. I'm constantly getting disconnected with this ancient internet connection. D---! There it went again. I'll see if I can finish then reconnect to post. Long story... We live in "the country", even though it's still considered the Dallas/Ft.Worth metroplex. No cable, no DSL, it's satellite TV and dial up or nothing. Go figure, just oh, maybe a quarter mile up the road they have cable. We are getting fiber optic lines laid on our road as I type! Woohoo! We so can't wait. Off subject sorry...
Back on topic though, NE is Nebraska and UNMC is the University of Nebraska Medical Center. She goes to the CF clinic there as she was trying to go to school at the University of Nebraska. My husband retired from the AF (after 26yrs) the summer of 05. Just after Anna graduated. She graduated, he retired and we moved from NE to Texas. Home for me. She went back to NE to go to school. When she came home last (05) fall she was seen here at the children's hospital where our other daughter now goes. When she tried to go back to school this fall she transfered back to her NE clinic. She did all her own research and decided she wanted to go to UNC Chapel Hill for her transplant eval. but we found out it was in a different insurance region. So she said OK, I'll go to Stanford then. So her transplant eval. was at Stanford in California. They are the ones that said she wasn't ready yet. Which at the time of her eval. she had just gotten off IV antibiotics just two days before her PFT's. Of course she's going to blow well. But as you know, it doesn't stay up there for long. Certainly not long enough. It'd be great if they could stay up there for longer than a week or so. But they don't. (I think I would be "happy" with going three months between IV antibiotics, of course longer would be better.)It doesn't matter if she's away at school or here at home with us. They did think at one point that maybe she was neglecting her treatments, maybe not doing them fully or putting the occassional treatment off with the demands of college life and stuff. She got her friend to do her percussion on her back, since they were firm believers that she could not adequitely percussor her own back. No diff. She came home under the "watchful eyes" of her parents and still no change. She was still being admitted every other month. I mean, jeez, at one point she had been on IV antbiotics in hospital and at home for 5 straight weeks and the highest her pft's got was the low 50's and that didn't stand for long. She still started feeling bad about 2wks later. In fact this last round was the longest she's been between, lasting almost a month before she started feeling bad. So she tried going back to school again but ended up having to take another leave of absence. And she so loves her doctors up there and has the utmost confidence in them, and they know her history and they know HER. So here we are 12hrs apart. I'll be headed up there next week. She has pft's today we'll see how they go.
It is hard sometimes with both of our girls having CF. Rachel though has somehow managed to only have had to have IV antibiotics twice. The first time simply because she'd never had a "clean out" before and her pft's were slightly down. Numbers many would love to have, at that time she was usually around 98, they were down to like 92 somewhere around there. They didn't even want to try a round of oral antibiotics. They said, 10 days min. She was 10, our first year back from living overseas and she missed Halloween. Not a happy camper. She was really into riding her bike all over the place at the time so my husband brought her bike into the hospital room with a trainer so she could ride stationary. She'd be peddling away playing nintendo, while I sat there sewing on my sewing machine. I forget what I was making at the time. After about the 7th day the docs came in a said, get outta here. I firmly believe that a round of oral would have done the trick. Last year she went in for dehydration and they said, since you're here... She stayed the full 14 days. She's 16 now. She doesn't have much lung involvement, mostly GI. But all is basically going very well for her. Only occassionally do they both get sick at the same time or do I need to be in two places at once. Like new year's week.
Lately I get to wondering if we should have stayed in NE and not moved home. But my parents are right here in the area and the rest of my extended family, aunts, uncles, grandparents, my dad, they are mostly all here in TX as well. It would certainly be easier if Anna was here but we understand her desire to stay with her docs. They are great and we are lucky they take such good care of her. So, we sit in limbo waiting to see what the transplant centers decision will be come March 1st.
This is way long, sorry. You didn't ask our whole history but thought I'd fill you in. I know I'd have wondered, "well why is she in NE and they're in TX?", "why is she going all the way to CA?" We figured she's the one getting the transplant, she's got to have the confidence in the center and staff to put her life in their hands. And when the time comes, Anna and I will move and Rachel will stay here with Dad and the dogs.
Back on topic though, NE is Nebraska and UNMC is the University of Nebraska Medical Center. She goes to the CF clinic there as she was trying to go to school at the University of Nebraska. My husband retired from the AF (after 26yrs) the summer of 05. Just after Anna graduated. She graduated, he retired and we moved from NE to Texas. Home for me. She went back to NE to go to school. When she came home last (05) fall she was seen here at the children's hospital where our other daughter now goes. When she tried to go back to school this fall she transfered back to her NE clinic. She did all her own research and decided she wanted to go to UNC Chapel Hill for her transplant eval. but we found out it was in a different insurance region. So she said OK, I'll go to Stanford then. So her transplant eval. was at Stanford in California. They are the ones that said she wasn't ready yet. Which at the time of her eval. she had just gotten off IV antibiotics just two days before her PFT's. Of course she's going to blow well. But as you know, it doesn't stay up there for long. Certainly not long enough. It'd be great if they could stay up there for longer than a week or so. But they don't. (I think I would be "happy" with going three months between IV antibiotics, of course longer would be better.)It doesn't matter if she's away at school or here at home with us. They did think at one point that maybe she was neglecting her treatments, maybe not doing them fully or putting the occassional treatment off with the demands of college life and stuff. She got her friend to do her percussion on her back, since they were firm believers that she could not adequitely percussor her own back. No diff. She came home under the "watchful eyes" of her parents and still no change. She was still being admitted every other month. I mean, jeez, at one point she had been on IV antbiotics in hospital and at home for 5 straight weeks and the highest her pft's got was the low 50's and that didn't stand for long. She still started feeling bad about 2wks later. In fact this last round was the longest she's been between, lasting almost a month before she started feeling bad. So she tried going back to school again but ended up having to take another leave of absence. And she so loves her doctors up there and has the utmost confidence in them, and they know her history and they know HER. So here we are 12hrs apart. I'll be headed up there next week. She has pft's today we'll see how they go.
It is hard sometimes with both of our girls having CF. Rachel though has somehow managed to only have had to have IV antibiotics twice. The first time simply because she'd never had a "clean out" before and her pft's were slightly down. Numbers many would love to have, at that time she was usually around 98, they were down to like 92 somewhere around there. They didn't even want to try a round of oral antibiotics. They said, 10 days min. She was 10, our first year back from living overseas and she missed Halloween. Not a happy camper. She was really into riding her bike all over the place at the time so my husband brought her bike into the hospital room with a trainer so she could ride stationary. She'd be peddling away playing nintendo, while I sat there sewing on my sewing machine. I forget what I was making at the time. After about the 7th day the docs came in a said, get outta here. I firmly believe that a round of oral would have done the trick. Last year she went in for dehydration and they said, since you're here... She stayed the full 14 days. She's 16 now. She doesn't have much lung involvement, mostly GI. But all is basically going very well for her. Only occassionally do they both get sick at the same time or do I need to be in two places at once. Like new year's week.
Lately I get to wondering if we should have stayed in NE and not moved home. But my parents are right here in the area and the rest of my extended family, aunts, uncles, grandparents, my dad, they are mostly all here in TX as well. It would certainly be easier if Anna was here but we understand her desire to stay with her docs. They are great and we are lucky they take such good care of her. So, we sit in limbo waiting to see what the transplant centers decision will be come March 1st.
This is way long, sorry. You didn't ask our whole history but thought I'd fill you in. I know I'd have wondered, "well why is she in NE and they're in TX?", "why is she going all the way to CA?" We figured she's the one getting the transplant, she's got to have the confidence in the center and staff to put her life in their hands. And when the time comes, Anna and I will move and Rachel will stay here with Dad and the dogs.
Hi again, Bear with me here if this gets all messed up. My husband left on a business trip this AM and I'm back to using the dial up connection as his laptop with the wireless card is with him. I'm constantly getting disconnected with this ancient internet connection. D---! There it went again. I'll see if I can finish then reconnect to post. Long story... We live in "the country", even though it's still considered the Dallas/Ft.Worth metroplex. No cable, no DSL, it's satellite TV and dial up or nothing. Go figure, just oh, maybe a quarter mile up the road they have cable. We are getting fiber optic lines laid on our road as I type! Woohoo! We so can't wait. Off subject sorry...
Back on topic though, NE is Nebraska and UNMC is the University of Nebraska Medical Center. She goes to the CF clinic there as she was trying to go to school at the University of Nebraska. My husband retired from the AF (after 26yrs) the summer of 05. Just after Anna graduated. She graduated, he retired and we moved from NE to Texas. Home for me. She went back to NE to go to school. When she came home last (05) fall she was seen here at the children's hospital where our other daughter now goes. When she tried to go back to school this fall she transfered back to her NE clinic. She did all her own research and decided she wanted to go to UNC Chapel Hill for her transplant eval. but we found out it was in a different insurance region. So she said OK, I'll go to Stanford then. So her transplant eval. was at Stanford in California. They are the ones that said she wasn't ready yet. Which at the time of her eval. she had just gotten off IV antibiotics just two days before her PFT's. Of course she's going to blow well. But as you know, it doesn't stay up there for long. Certainly not long enough. It'd be great if they could stay up there for longer than a week or so. But they don't. (I think I would be "happy" with going three months between IV antibiotics, of course longer would be better.)It doesn't matter if she's away at school or here at home with us. They did think at one point that maybe she was neglecting her treatments, maybe not doing them fully or putting the occassional treatment off with the demands of college life and stuff. She got her friend to do her percussion on her back, since they were firm believers that she could not adequitely percussor her own back. No diff. She came home under the "watchful eyes" of her parents and still no change. She was still being admitted every other month. I mean, jeez, at one point she had been on IV antbiotics in hospital and at home for 5 straight weeks and the highest her pft's got was the low 50's and that didn't stand for long. She still started feeling bad about 2wks later. In fact this last round was the longest she's been between, lasting almost a month before she started feeling bad. So she tried going back to school again but ended up having to take another leave of absence. And she so loves her doctors up there and has the utmost confidence in them, and they know her history and they know HER. So here we are 12hrs apart. I'll be headed up there next week. She has pft's today we'll see how they go.
It is hard sometimes with both of our girls having CF. Rachel though has somehow managed to only have had to have IV antibiotics twice. The first time simply because she'd never had a "clean out" before and her pft's were slightly down. Numbers many would love to have, at that time she was usually around 98, they were down to like 92 somewhere around there. They didn't even want to try a round of oral antibiotics. They said, 10 days min. She was 10, our first year back from living overseas and she missed Halloween. Not a happy camper. She was really into riding her bike all over the place at the time so my husband brought her bike into the hospital room with a trainer so she could ride stationary. She'd be peddling away playing nintendo, while I sat there sewing on my sewing machine. I forget what I was making at the time. After about the 7th day the docs came in a said, get outta here. I firmly believe that a round of oral would have done the trick. Last year she went in for dehydration and they said, since you're here... She stayed the full 14 days. She's 16 now. She doesn't have much lung involvement, mostly GI. But all is basically going very well for her. Only occassionally do they both get sick at the same time or do I need to be in two places at once. Like new year's week.
Lately I get to wondering if we should have stayed in NE and not moved home. But my parents are right here in the area and the rest of my extended family, aunts, uncles, grandparents, my dad, they are mostly all here in TX as well. It would certainly be easier if Anna was here but we understand her desire to stay with her docs. They are great and we are lucky they take such good care of her. So, we sit in limbo waiting to see what the transplant centers decision will be come March 1st.
This is way long, sorry. You didn't ask our whole history but thought I'd fill you in. I know I'd have wondered, "well why is she in NE and they're in TX?", "why is she going all the way to CA?" We figured she's the one getting the transplant, she's got to have the confidence in the center and staff to put her life in their hands. And when the time comes, Anna and I will move and Rachel will stay here with Dad and the dogs.
Back on topic though, NE is Nebraska and UNMC is the University of Nebraska Medical Center. She goes to the CF clinic there as she was trying to go to school at the University of Nebraska. My husband retired from the AF (after 26yrs) the summer of 05. Just after Anna graduated. She graduated, he retired and we moved from NE to Texas. Home for me. She went back to NE to go to school. When she came home last (05) fall she was seen here at the children's hospital where our other daughter now goes. When she tried to go back to school this fall she transfered back to her NE clinic. She did all her own research and decided she wanted to go to UNC Chapel Hill for her transplant eval. but we found out it was in a different insurance region. So she said OK, I'll go to Stanford then. So her transplant eval. was at Stanford in California. They are the ones that said she wasn't ready yet. Which at the time of her eval. she had just gotten off IV antibiotics just two days before her PFT's. Of course she's going to blow well. But as you know, it doesn't stay up there for long. Certainly not long enough. It'd be great if they could stay up there for longer than a week or so. But they don't. (I think I would be "happy" with going three months between IV antibiotics, of course longer would be better.)It doesn't matter if she's away at school or here at home with us. They did think at one point that maybe she was neglecting her treatments, maybe not doing them fully or putting the occassional treatment off with the demands of college life and stuff. She got her friend to do her percussion on her back, since they were firm believers that she could not adequitely percussor her own back. No diff. She came home under the "watchful eyes" of her parents and still no change. She was still being admitted every other month. I mean, jeez, at one point she had been on IV antbiotics in hospital and at home for 5 straight weeks and the highest her pft's got was the low 50's and that didn't stand for long. She still started feeling bad about 2wks later. In fact this last round was the longest she's been between, lasting almost a month before she started feeling bad. So she tried going back to school again but ended up having to take another leave of absence. And she so loves her doctors up there and has the utmost confidence in them, and they know her history and they know HER. So here we are 12hrs apart. I'll be headed up there next week. She has pft's today we'll see how they go.
It is hard sometimes with both of our girls having CF. Rachel though has somehow managed to only have had to have IV antibiotics twice. The first time simply because she'd never had a "clean out" before and her pft's were slightly down. Numbers many would love to have, at that time she was usually around 98, they were down to like 92 somewhere around there. They didn't even want to try a round of oral antibiotics. They said, 10 days min. She was 10, our first year back from living overseas and she missed Halloween. Not a happy camper. She was really into riding her bike all over the place at the time so my husband brought her bike into the hospital room with a trainer so she could ride stationary. She'd be peddling away playing nintendo, while I sat there sewing on my sewing machine. I forget what I was making at the time. After about the 7th day the docs came in a said, get outta here. I firmly believe that a round of oral would have done the trick. Last year she went in for dehydration and they said, since you're here... She stayed the full 14 days. She's 16 now. She doesn't have much lung involvement, mostly GI. But all is basically going very well for her. Only occassionally do they both get sick at the same time or do I need to be in two places at once. Like new year's week.
Lately I get to wondering if we should have stayed in NE and not moved home. But my parents are right here in the area and the rest of my extended family, aunts, uncles, grandparents, my dad, they are mostly all here in TX as well. It would certainly be easier if Anna was here but we understand her desire to stay with her docs. They are great and we are lucky they take such good care of her. So, we sit in limbo waiting to see what the transplant centers decision will be come March 1st.
This is way long, sorry. You didn't ask our whole history but thought I'd fill you in. I know I'd have wondered, "well why is she in NE and they're in TX?", "why is she going all the way to CA?" We figured she's the one getting the transplant, she's got to have the confidence in the center and staff to put her life in their hands. And when the time comes, Anna and I will move and Rachel will stay here with Dad and the dogs.
Hi again, Bear with me here if this gets all messed up. My husband left on a business trip this AM and I'm back to using the dial up connection as his laptop with the wireless card is with him. I'm constantly getting disconnected with this ancient internet connection. D---! There it went again. I'll see if I can finish then reconnect to post. Long story... We live in "the country", even though it's still considered the Dallas/Ft.Worth metroplex. No cable, no DSL, it's satellite TV and dial up or nothing. Go figure, just oh, maybe a quarter mile up the road they have cable. We are getting fiber optic lines laid on our road as I type! Woohoo! We so can't wait. Off subject sorry...
Back on topic though, NE is Nebraska and UNMC is the University of Nebraska Medical Center. She goes to the CF clinic there as she was trying to go to school at the University of Nebraska. My husband retired from the AF (after 26yrs) the summer of 05. Just after Anna graduated. She graduated, he retired and we moved from NE to Texas. Home for me. She went back to NE to go to school. When she came home last (05) fall she was seen here at the children's hospital where our other daughter now goes. When she tried to go back to school this fall she transfered back to her NE clinic. She did all her own research and decided she wanted to go to UNC Chapel Hill for her transplant eval. but we found out it was in a different insurance region. So she said OK, I'll go to Stanford then. So her transplant eval. was at Stanford in California. They are the ones that said she wasn't ready yet. Which at the time of her eval. she had just gotten off IV antibiotics just two days before her PFT's. Of course she's going to blow well. But as you know, it doesn't stay up there for long. Certainly not long enough. It'd be great if they could stay up there for longer than a week or so. But they don't. (I think I would be "happy" with going three months between IV antibiotics, of course longer would be better.)It doesn't matter if she's away at school or here at home with us. They did think at one point that maybe she was neglecting her treatments, maybe not doing them fully or putting the occassional treatment off with the demands of college life and stuff. She got her friend to do her percussion on her back, since they were firm believers that she could not adequitely percussor her own back. No diff. She came home under the "watchful eyes" of her parents and still no change. She was still being admitted every other month. I mean, jeez, at one point she had been on IV antbiotics in hospital and at home for 5 straight weeks and the highest her pft's got was the low 50's and that didn't stand for long. She still started feeling bad about 2wks later. In fact this last round was the longest she's been between, lasting almost a month before she started feeling bad. So she tried going back to school again but ended up having to take another leave of absence. And she so loves her doctors up there and has the utmost confidence in them, and they know her history and they know HER. So here we are 12hrs apart. I'll be headed up there next week. She has pft's today we'll see how they go.
It is hard sometimes with both of our girls having CF. Rachel though has somehow managed to only have had to have IV antibiotics twice. The first time simply because she'd never had a "clean out" before and her pft's were slightly down. Numbers many would love to have, at that time she was usually around 98, they were down to like 92 somewhere around there. They didn't even want to try a round of oral antibiotics. They said, 10 days min. She was 10, our first year back from living overseas and she missed Halloween. Not a happy camper. She was really into riding her bike all over the place at the time so my husband brought her bike into the hospital room with a trainer so she could ride stationary. She'd be peddling away playing nintendo, while I sat there sewing on my sewing machine. I forget what I was making at the time. After about the 7th day the docs came in a said, get outta here. I firmly believe that a round of oral would have done the trick. Last year she went in for dehydration and they said, since you're here... She stayed the full 14 days. She's 16 now. She doesn't have much lung involvement, mostly GI. But all is basically going very well for her. Only occassionally do they both get sick at the same time or do I need to be in two places at once. Like new year's week.
Lately I get to wondering if we should have stayed in NE and not moved home. But my parents are right here in the area and the rest of my extended family, aunts, uncles, grandparents, my dad, they are mostly all here in TX as well. It would certainly be easier if Anna was here but we understand her desire to stay with her docs. They are great and we are lucky they take such good care of her. So, we sit in limbo waiting to see what the transplant centers decision will be come March 1st.
This is way long, sorry. You didn't ask our whole history but thought I'd fill you in. I know I'd have wondered, "well why is she in NE and they're in TX?", "why is she going all the way to CA?" We figured she's the one getting the transplant, she's got to have the confidence in the center and staff to put her life in their hands. And when the time comes, Anna and I will move and Rachel will stay here with Dad and the dogs.
Back on topic though, NE is Nebraska and UNMC is the University of Nebraska Medical Center. She goes to the CF clinic there as she was trying to go to school at the University of Nebraska. My husband retired from the AF (after 26yrs) the summer of 05. Just after Anna graduated. She graduated, he retired and we moved from NE to Texas. Home for me. She went back to NE to go to school. When she came home last (05) fall she was seen here at the children's hospital where our other daughter now goes. When she tried to go back to school this fall she transfered back to her NE clinic. She did all her own research and decided she wanted to go to UNC Chapel Hill for her transplant eval. but we found out it was in a different insurance region. So she said OK, I'll go to Stanford then. So her transplant eval. was at Stanford in California. They are the ones that said she wasn't ready yet. Which at the time of her eval. she had just gotten off IV antibiotics just two days before her PFT's. Of course she's going to blow well. But as you know, it doesn't stay up there for long. Certainly not long enough. It'd be great if they could stay up there for longer than a week or so. But they don't. (I think I would be "happy" with going three months between IV antibiotics, of course longer would be better.)It doesn't matter if she's away at school or here at home with us. They did think at one point that maybe she was neglecting her treatments, maybe not doing them fully or putting the occassional treatment off with the demands of college life and stuff. She got her friend to do her percussion on her back, since they were firm believers that she could not adequitely percussor her own back. No diff. She came home under the "watchful eyes" of her parents and still no change. She was still being admitted every other month. I mean, jeez, at one point she had been on IV antbiotics in hospital and at home for 5 straight weeks and the highest her pft's got was the low 50's and that didn't stand for long. She still started feeling bad about 2wks later. In fact this last round was the longest she's been between, lasting almost a month before she started feeling bad. So she tried going back to school again but ended up having to take another leave of absence. And she so loves her doctors up there and has the utmost confidence in them, and they know her history and they know HER. So here we are 12hrs apart. I'll be headed up there next week. She has pft's today we'll see how they go.
It is hard sometimes with both of our girls having CF. Rachel though has somehow managed to only have had to have IV antibiotics twice. The first time simply because she'd never had a "clean out" before and her pft's were slightly down. Numbers many would love to have, at that time she was usually around 98, they were down to like 92 somewhere around there. They didn't even want to try a round of oral antibiotics. They said, 10 days min. She was 10, our first year back from living overseas and she missed Halloween. Not a happy camper. She was really into riding her bike all over the place at the time so my husband brought her bike into the hospital room with a trainer so she could ride stationary. She'd be peddling away playing nintendo, while I sat there sewing on my sewing machine. I forget what I was making at the time. After about the 7th day the docs came in a said, get outta here. I firmly believe that a round of oral would have done the trick. Last year she went in for dehydration and they said, since you're here... She stayed the full 14 days. She's 16 now. She doesn't have much lung involvement, mostly GI. But all is basically going very well for her. Only occassionally do they both get sick at the same time or do I need to be in two places at once. Like new year's week.
Lately I get to wondering if we should have stayed in NE and not moved home. But my parents are right here in the area and the rest of my extended family, aunts, uncles, grandparents, my dad, they are mostly all here in TX as well. It would certainly be easier if Anna was here but we understand her desire to stay with her docs. They are great and we are lucky they take such good care of her. So, we sit in limbo waiting to see what the transplant centers decision will be come March 1st.
This is way long, sorry. You didn't ask our whole history but thought I'd fill you in. I know I'd have wondered, "well why is she in NE and they're in TX?", "why is she going all the way to CA?" We figured she's the one getting the transplant, she's got to have the confidence in the center and staff to put her life in their hands. And when the time comes, Anna and I will move and Rachel will stay here with Dad and the dogs.
madisonsmom
New member
Liza ,
Thanks for sharing. It makes sence now. At first, when you said NE I was thinking NewEngland. Madison was born in Vermont and we lived there for 6 yrs. We came to the midwest in '90 for a job change with my husband. I'm a nurse and work for the federal government so I just transfered to a VA out here. I worked parttime until recently, as I always wanted to be there for Maddy.
It sounds like your daughter Anna is very "together" by being able to research the transplant issue on her own. I wish my daughter was more involved , she lets me take the lead. We have worked on her being more independent in the last few years. That's partly why I started working fulltime. She went to UWM and lived there for her freshman year 2003-2004. It was close enough that if she needed a tune up it wasn't too far. 2004-2005 she lived with friends near campus. Needless to say this last year she didn't want to go to the dorm/ apt. as all of the treatments and meds required didn't mesh well with college life. Our plan was to have her spend some time at home while going to school and take better care of her self, but as you said living at home even with supervision didn't seem to change things. The question of complience had come up via her MD several times. Maddy is working diligently with a therapist to stay focused and maintain her health, while trying to be a young adult too.
Madison has boyfriend that keeps her in the loop of "life,and several friends stay connected with the frequent hospitalizations, going to see her and visiting when she's too droopy to do anything. She has been taking 1 class a semester as I've told her that her job is to take care of herself.(a full time job).
Well, as I said previously,my husband has a contract in IL monday-friday and he's HOME now!!! We're going to go out and catchup with life a little.
Please keep me updated , I'm finding that I really look forward to your reply. It has somehow validated my feelings.
kathy
Thanks for sharing. It makes sence now. At first, when you said NE I was thinking NewEngland. Madison was born in Vermont and we lived there for 6 yrs. We came to the midwest in '90 for a job change with my husband. I'm a nurse and work for the federal government so I just transfered to a VA out here. I worked parttime until recently, as I always wanted to be there for Maddy.
It sounds like your daughter Anna is very "together" by being able to research the transplant issue on her own. I wish my daughter was more involved , she lets me take the lead. We have worked on her being more independent in the last few years. That's partly why I started working fulltime. She went to UWM and lived there for her freshman year 2003-2004. It was close enough that if she needed a tune up it wasn't too far. 2004-2005 she lived with friends near campus. Needless to say this last year she didn't want to go to the dorm/ apt. as all of the treatments and meds required didn't mesh well with college life. Our plan was to have her spend some time at home while going to school and take better care of her self, but as you said living at home even with supervision didn't seem to change things. The question of complience had come up via her MD several times. Maddy is working diligently with a therapist to stay focused and maintain her health, while trying to be a young adult too.
Madison has boyfriend that keeps her in the loop of "life,and several friends stay connected with the frequent hospitalizations, going to see her and visiting when she's too droopy to do anything. She has been taking 1 class a semester as I've told her that her job is to take care of herself.(a full time job).
Well, as I said previously,my husband has a contract in IL monday-friday and he's HOME now!!! We're going to go out and catchup with life a little.
Please keep me updated , I'm finding that I really look forward to your reply. It has somehow validated my feelings.
kathy
madisonsmom
New member
Liza ,
Thanks for sharing. It makes sence now. At first, when you said NE I was thinking NewEngland. Madison was born in Vermont and we lived there for 6 yrs. We came to the midwest in '90 for a job change with my husband. I'm a nurse and work for the federal government so I just transfered to a VA out here. I worked parttime until recently, as I always wanted to be there for Maddy.
It sounds like your daughter Anna is very "together" by being able to research the transplant issue on her own. I wish my daughter was more involved , she lets me take the lead. We have worked on her being more independent in the last few years. That's partly why I started working fulltime. She went to UWM and lived there for her freshman year 2003-2004. It was close enough that if she needed a tune up it wasn't too far. 2004-2005 she lived with friends near campus. Needless to say this last year she didn't want to go to the dorm/ apt. as all of the treatments and meds required didn't mesh well with college life. Our plan was to have her spend some time at home while going to school and take better care of her self, but as you said living at home even with supervision didn't seem to change things. The question of complience had come up via her MD several times. Maddy is working diligently with a therapist to stay focused and maintain her health, while trying to be a young adult too.
Madison has boyfriend that keeps her in the loop of "life,and several friends stay connected with the frequent hospitalizations, going to see her and visiting when she's too droopy to do anything. She has been taking 1 class a semester as I've told her that her job is to take care of herself.(a full time job).
Well, as I said previously,my husband has a contract in IL monday-friday and he's HOME now!!! We're going to go out and catchup with life a little.
Please keep me updated , I'm finding that I really look forward to your reply. It has somehow validated my feelings.
kathy
Thanks for sharing. It makes sence now. At first, when you said NE I was thinking NewEngland. Madison was born in Vermont and we lived there for 6 yrs. We came to the midwest in '90 for a job change with my husband. I'm a nurse and work for the federal government so I just transfered to a VA out here. I worked parttime until recently, as I always wanted to be there for Maddy.
It sounds like your daughter Anna is very "together" by being able to research the transplant issue on her own. I wish my daughter was more involved , she lets me take the lead. We have worked on her being more independent in the last few years. That's partly why I started working fulltime. She went to UWM and lived there for her freshman year 2003-2004. It was close enough that if she needed a tune up it wasn't too far. 2004-2005 she lived with friends near campus. Needless to say this last year she didn't want to go to the dorm/ apt. as all of the treatments and meds required didn't mesh well with college life. Our plan was to have her spend some time at home while going to school and take better care of her self, but as you said living at home even with supervision didn't seem to change things. The question of complience had come up via her MD several times. Maddy is working diligently with a therapist to stay focused and maintain her health, while trying to be a young adult too.
Madison has boyfriend that keeps her in the loop of "life,and several friends stay connected with the frequent hospitalizations, going to see her and visiting when she's too droopy to do anything. She has been taking 1 class a semester as I've told her that her job is to take care of herself.(a full time job).
Well, as I said previously,my husband has a contract in IL monday-friday and he's HOME now!!! We're going to go out and catchup with life a little.
Please keep me updated , I'm finding that I really look forward to your reply. It has somehow validated my feelings.
kathy
madisonsmom
New member
Liza ,
Thanks for sharing. It makes sence now. At first, when you said NE I was thinking NewEngland. Madison was born in Vermont and we lived there for 6 yrs. We came to the midwest in '90 for a job change with my husband. I'm a nurse and work for the federal government so I just transfered to a VA out here. I worked parttime until recently, as I always wanted to be there for Maddy.
It sounds like your daughter Anna is very "together" by being able to research the transplant issue on her own. I wish my daughter was more involved , she lets me take the lead. We have worked on her being more independent in the last few years. That's partly why I started working fulltime. She went to UWM and lived there for her freshman year 2003-2004. It was close enough that if she needed a tune up it wasn't too far. 2004-2005 she lived with friends near campus. Needless to say this last year she didn't want to go to the dorm/ apt. as all of the treatments and meds required didn't mesh well with college life. Our plan was to have her spend some time at home while going to school and take better care of her self, but as you said living at home even with supervision didn't seem to change things. The question of complience had come up via her MD several times. Maddy is working diligently with a therapist to stay focused and maintain her health, while trying to be a young adult too.
Madison has boyfriend that keeps her in the loop of "life,and several friends stay connected with the frequent hospitalizations, going to see her and visiting when she's too droopy to do anything. She has been taking 1 class a semester as I've told her that her job is to take care of herself.(a full time job).
Well, as I said previously,my husband has a contract in IL monday-friday and he's HOME now!!! We're going to go out and catchup with life a little.
Please keep me updated , I'm finding that I really look forward to your reply. It has somehow validated my feelings.
kathy
Thanks for sharing. It makes sence now. At first, when you said NE I was thinking NewEngland. Madison was born in Vermont and we lived there for 6 yrs. We came to the midwest in '90 for a job change with my husband. I'm a nurse and work for the federal government so I just transfered to a VA out here. I worked parttime until recently, as I always wanted to be there for Maddy.
It sounds like your daughter Anna is very "together" by being able to research the transplant issue on her own. I wish my daughter was more involved , she lets me take the lead. We have worked on her being more independent in the last few years. That's partly why I started working fulltime. She went to UWM and lived there for her freshman year 2003-2004. It was close enough that if she needed a tune up it wasn't too far. 2004-2005 she lived with friends near campus. Needless to say this last year she didn't want to go to the dorm/ apt. as all of the treatments and meds required didn't mesh well with college life. Our plan was to have her spend some time at home while going to school and take better care of her self, but as you said living at home even with supervision didn't seem to change things. The question of complience had come up via her MD several times. Maddy is working diligently with a therapist to stay focused and maintain her health, while trying to be a young adult too.
Madison has boyfriend that keeps her in the loop of "life,and several friends stay connected with the frequent hospitalizations, going to see her and visiting when she's too droopy to do anything. She has been taking 1 class a semester as I've told her that her job is to take care of herself.(a full time job).
Well, as I said previously,my husband has a contract in IL monday-friday and he's HOME now!!! We're going to go out and catchup with life a little.
Please keep me updated , I'm finding that I really look forward to your reply. It has somehow validated my feelings.
kathy
Hi Kathy, I hope you have a great weekend with your husband home. I too look forward to your replies. It is amazing what these little "chats" can do for a person.
Anna had her pft's done yesterday. And guess what? They were down. There is no reason why. Even the doctor was surprised to see that they had gone down from 24.5 to 22 between Tuesday and yesterday (friday). Nothing was changed. The nurse gave Stanford a call and now they are considering taking a look at her sooner than March 1st. But her doctor wanted to talk to the transplant doctor so he is planning on giving him a call. Either yesterday if there was time left in the day or on Monday. I don't know what they may come up with if anything other than getting her to CA for a sooner visit. They were saying she could go home on Monday since no progress was being made. But now that he's planning on talking to the transplant doc. I don't know if that will change. I can't get out there until Wed. I don't think. We're expecting ice tonight and tomorrow and they were getting snow this weekend in NE. I don't want to try and get on a plane and be diverted or stranded on the tarmac. I'm sure you guys have heard many stories of people sitting and waiting for hours. So of course she's bummed at the thought of having to stay in longer than what he's already told her. I think we'll have to wait and see what is discussed in the doctor to doctor conversation. We thought for sure she'd get up to at least the 30's. She thought at least 35. Stressful weekend ahead.
How's Madison doing? Feeling OK? I say OK because if she's anything like Anna, OK is good. I surely hope that you guys can get to a clinic that is easier to get some answers from. It's great to hear that her friends check in with her and that her boyfriend keeps her posted. When Anna is in the hospital her friends can usually only drop in on the weekend because school is an hour away. So it's quite lonely sometimes. She has her laptop though and this time she's got a room with WiFi. Seems they are slowly outifitting the whole hospital with WiFi. So she shops on line. She looks at clothes, houses, horses, land, estates in France, all sorts of dreamy things.
Kylie, how are you doing? I hope you are in a up week. No antibiotics. So how did you come up with your screen name of Kybert? I just noticed a couple of days ago that you signed your name Kylie.
Anna had her pft's done yesterday. And guess what? They were down. There is no reason why. Even the doctor was surprised to see that they had gone down from 24.5 to 22 between Tuesday and yesterday (friday). Nothing was changed. The nurse gave Stanford a call and now they are considering taking a look at her sooner than March 1st. But her doctor wanted to talk to the transplant doctor so he is planning on giving him a call. Either yesterday if there was time left in the day or on Monday. I don't know what they may come up with if anything other than getting her to CA for a sooner visit. They were saying she could go home on Monday since no progress was being made. But now that he's planning on talking to the transplant doc. I don't know if that will change. I can't get out there until Wed. I don't think. We're expecting ice tonight and tomorrow and they were getting snow this weekend in NE. I don't want to try and get on a plane and be diverted or stranded on the tarmac. I'm sure you guys have heard many stories of people sitting and waiting for hours. So of course she's bummed at the thought of having to stay in longer than what he's already told her. I think we'll have to wait and see what is discussed in the doctor to doctor conversation. We thought for sure she'd get up to at least the 30's. She thought at least 35. Stressful weekend ahead.
How's Madison doing? Feeling OK? I say OK because if she's anything like Anna, OK is good. I surely hope that you guys can get to a clinic that is easier to get some answers from. It's great to hear that her friends check in with her and that her boyfriend keeps her posted. When Anna is in the hospital her friends can usually only drop in on the weekend because school is an hour away. So it's quite lonely sometimes. She has her laptop though and this time she's got a room with WiFi. Seems they are slowly outifitting the whole hospital with WiFi. So she shops on line. She looks at clothes, houses, horses, land, estates in France, all sorts of dreamy things.
Kylie, how are you doing? I hope you are in a up week. No antibiotics. So how did you come up with your screen name of Kybert? I just noticed a couple of days ago that you signed your name Kylie.
Hi Kathy, I hope you have a great weekend with your husband home. I too look forward to your replies. It is amazing what these little "chats" can do for a person.
Anna had her pft's done yesterday. And guess what? They were down. There is no reason why. Even the doctor was surprised to see that they had gone down from 24.5 to 22 between Tuesday and yesterday (friday). Nothing was changed. The nurse gave Stanford a call and now they are considering taking a look at her sooner than March 1st. But her doctor wanted to talk to the transplant doctor so he is planning on giving him a call. Either yesterday if there was time left in the day or on Monday. I don't know what they may come up with if anything other than getting her to CA for a sooner visit. They were saying she could go home on Monday since no progress was being made. But now that he's planning on talking to the transplant doc. I don't know if that will change. I can't get out there until Wed. I don't think. We're expecting ice tonight and tomorrow and they were getting snow this weekend in NE. I don't want to try and get on a plane and be diverted or stranded on the tarmac. I'm sure you guys have heard many stories of people sitting and waiting for hours. So of course she's bummed at the thought of having to stay in longer than what he's already told her. I think we'll have to wait and see what is discussed in the doctor to doctor conversation. We thought for sure she'd get up to at least the 30's. She thought at least 35. Stressful weekend ahead.
How's Madison doing? Feeling OK? I say OK because if she's anything like Anna, OK is good. I surely hope that you guys can get to a clinic that is easier to get some answers from. It's great to hear that her friends check in with her and that her boyfriend keeps her posted. When Anna is in the hospital her friends can usually only drop in on the weekend because school is an hour away. So it's quite lonely sometimes. She has her laptop though and this time she's got a room with WiFi. Seems they are slowly outifitting the whole hospital with WiFi. So she shops on line. She looks at clothes, houses, horses, land, estates in France, all sorts of dreamy things.
Kylie, how are you doing? I hope you are in a up week. No antibiotics. So how did you come up with your screen name of Kybert? I just noticed a couple of days ago that you signed your name Kylie.
Anna had her pft's done yesterday. And guess what? They were down. There is no reason why. Even the doctor was surprised to see that they had gone down from 24.5 to 22 between Tuesday and yesterday (friday). Nothing was changed. The nurse gave Stanford a call and now they are considering taking a look at her sooner than March 1st. But her doctor wanted to talk to the transplant doctor so he is planning on giving him a call. Either yesterday if there was time left in the day or on Monday. I don't know what they may come up with if anything other than getting her to CA for a sooner visit. They were saying she could go home on Monday since no progress was being made. But now that he's planning on talking to the transplant doc. I don't know if that will change. I can't get out there until Wed. I don't think. We're expecting ice tonight and tomorrow and they were getting snow this weekend in NE. I don't want to try and get on a plane and be diverted or stranded on the tarmac. I'm sure you guys have heard many stories of people sitting and waiting for hours. So of course she's bummed at the thought of having to stay in longer than what he's already told her. I think we'll have to wait and see what is discussed in the doctor to doctor conversation. We thought for sure she'd get up to at least the 30's. She thought at least 35. Stressful weekend ahead.
How's Madison doing? Feeling OK? I say OK because if she's anything like Anna, OK is good. I surely hope that you guys can get to a clinic that is easier to get some answers from. It's great to hear that her friends check in with her and that her boyfriend keeps her posted. When Anna is in the hospital her friends can usually only drop in on the weekend because school is an hour away. So it's quite lonely sometimes. She has her laptop though and this time she's got a room with WiFi. Seems they are slowly outifitting the whole hospital with WiFi. So she shops on line. She looks at clothes, houses, horses, land, estates in France, all sorts of dreamy things.
Kylie, how are you doing? I hope you are in a up week. No antibiotics. So how did you come up with your screen name of Kybert? I just noticed a couple of days ago that you signed your name Kylie.
Hi Kathy, I hope you have a great weekend with your husband home. I too look forward to your replies. It is amazing what these little "chats" can do for a person.
Anna had her pft's done yesterday. And guess what? They were down. There is no reason why. Even the doctor was surprised to see that they had gone down from 24.5 to 22 between Tuesday and yesterday (friday). Nothing was changed. The nurse gave Stanford a call and now they are considering taking a look at her sooner than March 1st. But her doctor wanted to talk to the transplant doctor so he is planning on giving him a call. Either yesterday if there was time left in the day or on Monday. I don't know what they may come up with if anything other than getting her to CA for a sooner visit. They were saying she could go home on Monday since no progress was being made. But now that he's planning on talking to the transplant doc. I don't know if that will change. I can't get out there until Wed. I don't think. We're expecting ice tonight and tomorrow and they were getting snow this weekend in NE. I don't want to try and get on a plane and be diverted or stranded on the tarmac. I'm sure you guys have heard many stories of people sitting and waiting for hours. So of course she's bummed at the thought of having to stay in longer than what he's already told her. I think we'll have to wait and see what is discussed in the doctor to doctor conversation. We thought for sure she'd get up to at least the 30's. She thought at least 35. Stressful weekend ahead.
How's Madison doing? Feeling OK? I say OK because if she's anything like Anna, OK is good. I surely hope that you guys can get to a clinic that is easier to get some answers from. It's great to hear that her friends check in with her and that her boyfriend keeps her posted. When Anna is in the hospital her friends can usually only drop in on the weekend because school is an hour away. So it's quite lonely sometimes. She has her laptop though and this time she's got a room with WiFi. Seems they are slowly outifitting the whole hospital with WiFi. So she shops on line. She looks at clothes, houses, horses, land, estates in France, all sorts of dreamy things.
Kylie, how are you doing? I hope you are in a up week. No antibiotics. So how did you come up with your screen name of Kybert? I just noticed a couple of days ago that you signed your name Kylie.
Anna had her pft's done yesterday. And guess what? They were down. There is no reason why. Even the doctor was surprised to see that they had gone down from 24.5 to 22 between Tuesday and yesterday (friday). Nothing was changed. The nurse gave Stanford a call and now they are considering taking a look at her sooner than March 1st. But her doctor wanted to talk to the transplant doctor so he is planning on giving him a call. Either yesterday if there was time left in the day or on Monday. I don't know what they may come up with if anything other than getting her to CA for a sooner visit. They were saying she could go home on Monday since no progress was being made. But now that he's planning on talking to the transplant doc. I don't know if that will change. I can't get out there until Wed. I don't think. We're expecting ice tonight and tomorrow and they were getting snow this weekend in NE. I don't want to try and get on a plane and be diverted or stranded on the tarmac. I'm sure you guys have heard many stories of people sitting and waiting for hours. So of course she's bummed at the thought of having to stay in longer than what he's already told her. I think we'll have to wait and see what is discussed in the doctor to doctor conversation. We thought for sure she'd get up to at least the 30's. She thought at least 35. Stressful weekend ahead.
How's Madison doing? Feeling OK? I say OK because if she's anything like Anna, OK is good. I surely hope that you guys can get to a clinic that is easier to get some answers from. It's great to hear that her friends check in with her and that her boyfriend keeps her posted. When Anna is in the hospital her friends can usually only drop in on the weekend because school is an hour away. So it's quite lonely sometimes. She has her laptop though and this time she's got a room with WiFi. Seems they are slowly outifitting the whole hospital with WiFi. So she shops on line. She looks at clothes, houses, horses, land, estates in France, all sorts of dreamy things.
Kylie, how are you doing? I hope you are in a up week. No antibiotics. So how did you come up with your screen name of Kybert? I just noticed a couple of days ago that you signed your name Kylie.
madisonsmom
New member
Liza,
Sorry to hear that Anna's pfts were down, I wonder if it's viral or something like APBA. That's what Maddy was dx with when we were looking for a reason why her #'s never improved. I don't know how much you know about ABPA (Allergic Broncho PulmonaryAspergilosis) but a small percentage of CFers get it. It can be hard to dx. Normally they just ck.their eosiophil count, a white cell that elevates when they are having an allergic responce to something. In some cases they have to do more bloodwork that they send off to a special lab. Of course, Madison's eosinaphil count was normal but when they did the more specific lab work it was positive. The treatment is steroids and antifungal meds. Fortunatly they have come up with new oral less toxic antifungal drugs in the last 5 years or so.
Is Anna on steroids normally? Maddy has been on more than off which is hard. She is currently on 20mg/day and will try to taper. She was in the hospital from 1/1/07 until the 6th and they let her come home as there were so many people in the hospital with viral illnesses. She went to the clinic on thursday and her pfts were 34. She is feeling better but her MD was not happy either as she usually will be up to the 40's by now. At least like you said OK is about as good as it gets. Some times Maddy will sleep most of the day away as she just doesn't have the energy. The only word Maddy got about the transplant was that the Socialworker at the clinic was suppose to fax the release of info forms on friday, which she never did. Imagine that.... So, we have been trying to expedite this transplant eval. process for 2-3wks and that how far we've come.... I'm off on Monday and I'm going to physically go to both hospitals and get the ball rolling. Madison's is actually afraid to say anything about the lack of responce as they have intimidated her so much every time we question "their process." I really think this hopital system wants to do a good job but they can't due to lack of administrative support. So they tend to take everything personally, when all I want is to advocate for my daughter.
When you describe Anna on the internet shoping and looking at dreamy places, again I think of Maddy. Maddy did all of her xmas shopping online in the hospital this year. That reminds me of another time when she was 10 months old ,she took her 1st steps in the hospital. I don't want to sound like she spent her whole life in the hosp.. She actually was quite healthy from age 2yrs until 15yrs. She played select soccer from 6-15yrs. I have mentioned to Maddy that I've been chatting with you and she is interested in the updates about Anna. I know she feels that no one really understand her life. Maybe they can chat sometime. I assume Anna does the IMing with her friends.
It's great that they have wireless rooms. We have to download a dial up connection when she's in the hospital. I know it gets so lonley for them. Maddy constantly wants me to bring her food as she hates the hosp food.
Well, I hope your MD can get Anna's eval moved closer.
and I hope Madison gets an eval before it's too late.
The weather is just starting to get bad here. I took the dog for a walk and it has started freezing rain/ice. Hopfully by Wed it will have cleared so you can get to NE.
Take Care
Kathy
Kiely, if you're there "hey" hope things are going well. I do like your user name ,"kybert" anxious to hear abot it.
Sorry to hear that Anna's pfts were down, I wonder if it's viral or something like APBA. That's what Maddy was dx with when we were looking for a reason why her #'s never improved. I don't know how much you know about ABPA (Allergic Broncho PulmonaryAspergilosis) but a small percentage of CFers get it. It can be hard to dx. Normally they just ck.their eosiophil count, a white cell that elevates when they are having an allergic responce to something. In some cases they have to do more bloodwork that they send off to a special lab. Of course, Madison's eosinaphil count was normal but when they did the more specific lab work it was positive. The treatment is steroids and antifungal meds. Fortunatly they have come up with new oral less toxic antifungal drugs in the last 5 years or so.
Is Anna on steroids normally? Maddy has been on more than off which is hard. She is currently on 20mg/day and will try to taper. She was in the hospital from 1/1/07 until the 6th and they let her come home as there were so many people in the hospital with viral illnesses. She went to the clinic on thursday and her pfts were 34. She is feeling better but her MD was not happy either as she usually will be up to the 40's by now. At least like you said OK is about as good as it gets. Some times Maddy will sleep most of the day away as she just doesn't have the energy. The only word Maddy got about the transplant was that the Socialworker at the clinic was suppose to fax the release of info forms on friday, which she never did. Imagine that.... So, we have been trying to expedite this transplant eval. process for 2-3wks and that how far we've come.... I'm off on Monday and I'm going to physically go to both hospitals and get the ball rolling. Madison's is actually afraid to say anything about the lack of responce as they have intimidated her so much every time we question "their process." I really think this hopital system wants to do a good job but they can't due to lack of administrative support. So they tend to take everything personally, when all I want is to advocate for my daughter.
When you describe Anna on the internet shoping and looking at dreamy places, again I think of Maddy. Maddy did all of her xmas shopping online in the hospital this year. That reminds me of another time when she was 10 months old ,she took her 1st steps in the hospital. I don't want to sound like she spent her whole life in the hosp.. She actually was quite healthy from age 2yrs until 15yrs. She played select soccer from 6-15yrs. I have mentioned to Maddy that I've been chatting with you and she is interested in the updates about Anna. I know she feels that no one really understand her life. Maybe they can chat sometime. I assume Anna does the IMing with her friends.
It's great that they have wireless rooms. We have to download a dial up connection when she's in the hospital. I know it gets so lonley for them. Maddy constantly wants me to bring her food as she hates the hosp food.
Well, I hope your MD can get Anna's eval moved closer.
and I hope Madison gets an eval before it's too late.
The weather is just starting to get bad here. I took the dog for a walk and it has started freezing rain/ice. Hopfully by Wed it will have cleared so you can get to NE.
Take Care
Kathy
Kiely, if you're there "hey" hope things are going well. I do like your user name ,"kybert" anxious to hear abot it.
madisonsmom
New member
Liza,
Sorry to hear that Anna's pfts were down, I wonder if it's viral or something like APBA. That's what Maddy was dx with when we were looking for a reason why her #'s never improved. I don't know how much you know about ABPA (Allergic Broncho PulmonaryAspergilosis) but a small percentage of CFers get it. It can be hard to dx. Normally they just ck.their eosiophil count, a white cell that elevates when they are having an allergic responce to something. In some cases they have to do more bloodwork that they send off to a special lab. Of course, Madison's eosinaphil count was normal but when they did the more specific lab work it was positive. The treatment is steroids and antifungal meds. Fortunatly they have come up with new oral less toxic antifungal drugs in the last 5 years or so.
Is Anna on steroids normally? Maddy has been on more than off which is hard. She is currently on 20mg/day and will try to taper. She was in the hospital from 1/1/07 until the 6th and they let her come home as there were so many people in the hospital with viral illnesses. She went to the clinic on thursday and her pfts were 34. She is feeling better but her MD was not happy either as she usually will be up to the 40's by now. At least like you said OK is about as good as it gets. Some times Maddy will sleep most of the day away as she just doesn't have the energy. The only word Maddy got about the transplant was that the Socialworker at the clinic was suppose to fax the release of info forms on friday, which she never did. Imagine that.... So, we have been trying to expedite this transplant eval. process for 2-3wks and that how far we've come.... I'm off on Monday and I'm going to physically go to both hospitals and get the ball rolling. Madison's is actually afraid to say anything about the lack of responce as they have intimidated her so much every time we question "their process." I really think this hopital system wants to do a good job but they can't due to lack of administrative support. So they tend to take everything personally, when all I want is to advocate for my daughter.
When you describe Anna on the internet shoping and looking at dreamy places, again I think of Maddy. Maddy did all of her xmas shopping online in the hospital this year. That reminds me of another time when she was 10 months old ,she took her 1st steps in the hospital. I don't want to sound like she spent her whole life in the hosp.. She actually was quite healthy from age 2yrs until 15yrs. She played select soccer from 6-15yrs. I have mentioned to Maddy that I've been chatting with you and she is interested in the updates about Anna. I know she feels that no one really understand her life. Maybe they can chat sometime. I assume Anna does the IMing with her friends.
It's great that they have wireless rooms. We have to download a dial up connection when she's in the hospital. I know it gets so lonley for them. Maddy constantly wants me to bring her food as she hates the hosp food.
Well, I hope your MD can get Anna's eval moved closer.
and I hope Madison gets an eval before it's too late.
The weather is just starting to get bad here. I took the dog for a walk and it has started freezing rain/ice. Hopfully by Wed it will have cleared so you can get to NE.
Take Care
Kathy
Kiely, if you're there "hey" hope things are going well. I do like your user name ,"kybert" anxious to hear abot it.
Sorry to hear that Anna's pfts were down, I wonder if it's viral or something like APBA. That's what Maddy was dx with when we were looking for a reason why her #'s never improved. I don't know how much you know about ABPA (Allergic Broncho PulmonaryAspergilosis) but a small percentage of CFers get it. It can be hard to dx. Normally they just ck.their eosiophil count, a white cell that elevates when they are having an allergic responce to something. In some cases they have to do more bloodwork that they send off to a special lab. Of course, Madison's eosinaphil count was normal but when they did the more specific lab work it was positive. The treatment is steroids and antifungal meds. Fortunatly they have come up with new oral less toxic antifungal drugs in the last 5 years or so.
Is Anna on steroids normally? Maddy has been on more than off which is hard. She is currently on 20mg/day and will try to taper. She was in the hospital from 1/1/07 until the 6th and they let her come home as there were so many people in the hospital with viral illnesses. She went to the clinic on thursday and her pfts were 34. She is feeling better but her MD was not happy either as she usually will be up to the 40's by now. At least like you said OK is about as good as it gets. Some times Maddy will sleep most of the day away as she just doesn't have the energy. The only word Maddy got about the transplant was that the Socialworker at the clinic was suppose to fax the release of info forms on friday, which she never did. Imagine that.... So, we have been trying to expedite this transplant eval. process for 2-3wks and that how far we've come.... I'm off on Monday and I'm going to physically go to both hospitals and get the ball rolling. Madison's is actually afraid to say anything about the lack of responce as they have intimidated her so much every time we question "their process." I really think this hopital system wants to do a good job but they can't due to lack of administrative support. So they tend to take everything personally, when all I want is to advocate for my daughter.
When you describe Anna on the internet shoping and looking at dreamy places, again I think of Maddy. Maddy did all of her xmas shopping online in the hospital this year. That reminds me of another time when she was 10 months old ,she took her 1st steps in the hospital. I don't want to sound like she spent her whole life in the hosp.. She actually was quite healthy from age 2yrs until 15yrs. She played select soccer from 6-15yrs. I have mentioned to Maddy that I've been chatting with you and she is interested in the updates about Anna. I know she feels that no one really understand her life. Maybe they can chat sometime. I assume Anna does the IMing with her friends.
It's great that they have wireless rooms. We have to download a dial up connection when she's in the hospital. I know it gets so lonley for them. Maddy constantly wants me to bring her food as she hates the hosp food.
Well, I hope your MD can get Anna's eval moved closer.
and I hope Madison gets an eval before it's too late.
The weather is just starting to get bad here. I took the dog for a walk and it has started freezing rain/ice. Hopfully by Wed it will have cleared so you can get to NE.
Take Care
Kathy
Kiely, if you're there "hey" hope things are going well. I do like your user name ,"kybert" anxious to hear abot it.
madisonsmom
New member
Liza,
Sorry to hear that Anna's pfts were down, I wonder if it's viral or something like APBA. That's what Maddy was dx with when we were looking for a reason why her #'s never improved. I don't know how much you know about ABPA (Allergic Broncho PulmonaryAspergilosis) but a small percentage of CFers get it. It can be hard to dx. Normally they just ck.their eosiophil count, a white cell that elevates when they are having an allergic responce to something. In some cases they have to do more bloodwork that they send off to a special lab. Of course, Madison's eosinaphil count was normal but when they did the more specific lab work it was positive. The treatment is steroids and antifungal meds. Fortunatly they have come up with new oral less toxic antifungal drugs in the last 5 years or so.
Is Anna on steroids normally? Maddy has been on more than off which is hard. She is currently on 20mg/day and will try to taper. She was in the hospital from 1/1/07 until the 6th and they let her come home as there were so many people in the hospital with viral illnesses. She went to the clinic on thursday and her pfts were 34. She is feeling better but her MD was not happy either as she usually will be up to the 40's by now. At least like you said OK is about as good as it gets. Some times Maddy will sleep most of the day away as she just doesn't have the energy. The only word Maddy got about the transplant was that the Socialworker at the clinic was suppose to fax the release of info forms on friday, which she never did. Imagine that.... So, we have been trying to expedite this transplant eval. process for 2-3wks and that how far we've come.... I'm off on Monday and I'm going to physically go to both hospitals and get the ball rolling. Madison's is actually afraid to say anything about the lack of responce as they have intimidated her so much every time we question "their process." I really think this hopital system wants to do a good job but they can't due to lack of administrative support. So they tend to take everything personally, when all I want is to advocate for my daughter.
When you describe Anna on the internet shoping and looking at dreamy places, again I think of Maddy. Maddy did all of her xmas shopping online in the hospital this year. That reminds me of another time when she was 10 months old ,she took her 1st steps in the hospital. I don't want to sound like she spent her whole life in the hosp.. She actually was quite healthy from age 2yrs until 15yrs. She played select soccer from 6-15yrs. I have mentioned to Maddy that I've been chatting with you and she is interested in the updates about Anna. I know she feels that no one really understand her life. Maybe they can chat sometime. I assume Anna does the IMing with her friends.
It's great that they have wireless rooms. We have to download a dial up connection when she's in the hospital. I know it gets so lonley for them. Maddy constantly wants me to bring her food as she hates the hosp food.
Well, I hope your MD can get Anna's eval moved closer.
and I hope Madison gets an eval before it's too late.
The weather is just starting to get bad here. I took the dog for a walk and it has started freezing rain/ice. Hopfully by Wed it will have cleared so you can get to NE.
Take Care
Kathy
Kiely, if you're there "hey" hope things are going well. I do like your user name ,"kybert" anxious to hear abot it.
Sorry to hear that Anna's pfts were down, I wonder if it's viral or something like APBA. That's what Maddy was dx with when we were looking for a reason why her #'s never improved. I don't know how much you know about ABPA (Allergic Broncho PulmonaryAspergilosis) but a small percentage of CFers get it. It can be hard to dx. Normally they just ck.their eosiophil count, a white cell that elevates when they are having an allergic responce to something. In some cases they have to do more bloodwork that they send off to a special lab. Of course, Madison's eosinaphil count was normal but when they did the more specific lab work it was positive. The treatment is steroids and antifungal meds. Fortunatly they have come up with new oral less toxic antifungal drugs in the last 5 years or so.
Is Anna on steroids normally? Maddy has been on more than off which is hard. She is currently on 20mg/day and will try to taper. She was in the hospital from 1/1/07 until the 6th and they let her come home as there were so many people in the hospital with viral illnesses. She went to the clinic on thursday and her pfts were 34. She is feeling better but her MD was not happy either as she usually will be up to the 40's by now. At least like you said OK is about as good as it gets. Some times Maddy will sleep most of the day away as she just doesn't have the energy. The only word Maddy got about the transplant was that the Socialworker at the clinic was suppose to fax the release of info forms on friday, which she never did. Imagine that.... So, we have been trying to expedite this transplant eval. process for 2-3wks and that how far we've come.... I'm off on Monday and I'm going to physically go to both hospitals and get the ball rolling. Madison's is actually afraid to say anything about the lack of responce as they have intimidated her so much every time we question "their process." I really think this hopital system wants to do a good job but they can't due to lack of administrative support. So they tend to take everything personally, when all I want is to advocate for my daughter.
When you describe Anna on the internet shoping and looking at dreamy places, again I think of Maddy. Maddy did all of her xmas shopping online in the hospital this year. That reminds me of another time when she was 10 months old ,she took her 1st steps in the hospital. I don't want to sound like she spent her whole life in the hosp.. She actually was quite healthy from age 2yrs until 15yrs. She played select soccer from 6-15yrs. I have mentioned to Maddy that I've been chatting with you and she is interested in the updates about Anna. I know she feels that no one really understand her life. Maybe they can chat sometime. I assume Anna does the IMing with her friends.
It's great that they have wireless rooms. We have to download a dial up connection when she's in the hospital. I know it gets so lonley for them. Maddy constantly wants me to bring her food as she hates the hosp food.
Well, I hope your MD can get Anna's eval moved closer.
and I hope Madison gets an eval before it's too late.
The weather is just starting to get bad here. I took the dog for a walk and it has started freezing rain/ice. Hopfully by Wed it will have cleared so you can get to NE.
Take Care
Kathy
Kiely, if you're there "hey" hope things are going well. I do like your user name ,"kybert" anxious to hear abot it.
im doing ok. yep, this is an up week, horah! my doc held off iv's because of tobramycin issues and put me on oral cipro and it has worked for once. i managed to go for a walk at the beach today! just crossing my fingers that i will stay ok for a while [which would be the first time in a long time!]. the name kybert is a mix of kylie and dogbert. back in the good ole days of mIRC my nickanme was dogbert. kind of morphed into kybert when the name dogbert was already taken on things like livejournal.
i hope you can get that appointment moved forward. and wifi in the hospital? woah! my hospital hasnt embraced any technology thats made after 1990 rofl! [thats not a joke either.... <img src="i/expressions/face-icon-small-sad.gif" border="0"> ]
i hope you can get that appointment moved forward. and wifi in the hospital? woah! my hospital hasnt embraced any technology thats made after 1990 rofl! [thats not a joke either.... <img src="i/expressions/face-icon-small-sad.gif" border="0"> ]
im doing ok. yep, this is an up week, horah! my doc held off iv's because of tobramycin issues and put me on oral cipro and it has worked for once. i managed to go for a walk at the beach today! just crossing my fingers that i will stay ok for a while [which would be the first time in a long time!]. the name kybert is a mix of kylie and dogbert. back in the good ole days of mIRC my nickanme was dogbert. kind of morphed into kybert when the name dogbert was already taken on things like livejournal.
i hope you can get that appointment moved forward. and wifi in the hospital? woah! my hospital hasnt embraced any technology thats made after 1990 rofl! [thats not a joke either.... <img src="i/expressions/face-icon-small-sad.gif" border="0"> ]
i hope you can get that appointment moved forward. and wifi in the hospital? woah! my hospital hasnt embraced any technology thats made after 1990 rofl! [thats not a joke either.... <img src="i/expressions/face-icon-small-sad.gif" border="0"> ]