I know i havent been on in a while so there are alot of people who are new and dont know me or my daughter zoey. Zoey is 11 months old and has cf. She is tpn dependent and has a mickey button. I took her to the doctor the other day and they said if they cant get her off the tpn that in six months her liver will be shut down. We have tried for 11 months to get her off her tpn but it hasnt happened... YET. We are very scared and we are not ready for her to leave us. She has been through so much and shes been a good trooper. My heart is completly broken in two. They said that she wouldnt make it through a liver transplant because of her cf her lungs wouldnt pull her through. So if there is anybody who has faced this before and may have some idea of something i might could suggest to her doctors to try please i am begging you to tell me. She wont take anything by mouth. she is in speech therapy ot and pt. She also throws up quite a bit. I am trying to see if the nissen surgery would be good for her but i would like feedback from some parents on this please. Please continue to keep us in your thoughts and prayers. Thanks......Sarah
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6 months to live...
- Thread starter Zoey7206
- Start date
I know i havent been on in a while so there are alot of people who are new and dont know me or my daughter zoey. Zoey is 11 months old and has cf. She is tpn dependent and has a mickey button. I took her to the doctor the other day and they said if they cant get her off the tpn that in six months her liver will be shut down. We have tried for 11 months to get her off her tpn but it hasnt happened... YET. We are very scared and we are not ready for her to leave us. She has been through so much and shes been a good trooper. My heart is completly broken in two. They said that she wouldnt make it through a liver transplant because of her cf her lungs wouldnt pull her through. So if there is anybody who has faced this before and may have some idea of something i might could suggest to her doctors to try please i am begging you to tell me. She wont take anything by mouth. she is in speech therapy ot and pt. She also throws up quite a bit. I am trying to see if the nissen surgery would be good for her but i would like feedback from some parents on this please. Please continue to keep us in your thoughts and prayers. Thanks......Sarah
I know i havent been on in a while so there are alot of people who are new and dont know me or my daughter zoey. Zoey is 11 months old and has cf. She is tpn dependent and has a mickey button. I took her to the doctor the other day and they said if they cant get her off the tpn that in six months her liver will be shut down. We have tried for 11 months to get her off her tpn but it hasnt happened... YET. We are very scared and we are not ready for her to leave us. She has been through so much and shes been a good trooper. My heart is completly broken in two. They said that she wouldnt make it through a liver transplant because of her cf her lungs wouldnt pull her through. So if there is anybody who has faced this before and may have some idea of something i might could suggest to her doctors to try please i am begging you to tell me. She wont take anything by mouth. she is in speech therapy ot and pt. She also throws up quite a bit. I am trying to see if the nissen surgery would be good for her but i would like feedback from some parents on this please. Please continue to keep us in your thoughts and prayers. Thanks......Sarah
I know i havent been on in a while so there are alot of people who are new and dont know me or my daughter zoey. Zoey is 11 months old and has cf. She is tpn dependent and has a mickey button. I took her to the doctor the other day and they said if they cant get her off the tpn that in six months her liver will be shut down. We have tried for 11 months to get her off her tpn but it hasnt happened... YET. We are very scared and we are not ready for her to leave us. She has been through so much and shes been a good trooper. My heart is completly broken in two. They said that she wouldnt make it through a liver transplant because of her cf her lungs wouldnt pull her through. So if there is anybody who has faced this before and may have some idea of something i might could suggest to her doctors to try please i am begging you to tell me. She wont take anything by mouth. she is in speech therapy ot and pt. She also throws up quite a bit. I am trying to see if the nissen surgery would be good for her but i would like feedback from some parents on this please. Please continue to keep us in your thoughts and prayers. Thanks......Sarah
I know i havent been on in a while so there are alot of people who are new and dont know me or my daughter zoey. Zoey is 11 months old and has cf. She is tpn dependent and has a mickey button. I took her to the doctor the other day and they said if they cant get her off the tpn that in six months her liver will be shut down. We have tried for 11 months to get her off her tpn but it hasnt happened... YET. We are very scared and we are not ready for her to leave us. She has been through so much and shes been a good trooper. My heart is completly broken in two. They said that she wouldnt make it through a liver transplant because of her cf her lungs wouldnt pull her through. So if there is anybody who has faced this before and may have some idea of something i might could suggest to her doctors to try please i am begging you to tell me. She wont take anything by mouth. she is in speech therapy ot and pt. She also throws up quite a bit. I am trying to see if the nissen surgery would be good for her but i would like feedback from some parents on this please. Please continue to keep us in your thoughts and prayers. Thanks......Sarah
I know i havent been on in a while so there are alot of people who are new and dont know me or my daughter zoey. Zoey is 11 months old and has cf. She is tpn dependent and has a mickey button. I took her to the doctor the other day and they said if they cant get her off the tpn that in six months her liver will be shut down. We have tried for 11 months to get her off her tpn but it hasnt happened... YET. We are very scared and we are not ready for her to leave us. She has been through so much and shes been a good trooper. My heart is completly broken in two. They said that she wouldnt make it through a liver transplant because of her cf her lungs wouldnt pull her through. So if there is anybody who has faced this before and may have some idea of something i might could suggest to her doctors to try please i am begging you to tell me. She wont take anything by mouth. she is in speech therapy ot and pt. She also throws up quite a bit. I am trying to see if the nissen surgery would be good for her but i would like feedback from some parents on this please. Please continue to keep us in your thoughts and prayers. Thanks......Sarah
CFHockeyMom
New member
I'm afraid I don't have much in the way of advice other than to get a second, third, fourth, etc. opinion. Don't wait, time is too valuable. You need to do everything you can now to know that you've done everything you could have for your daughter.
In the mean time, I'll be praying for you and precious little Zoey.
In the mean time, I'll be praying for you and precious little Zoey.
CFHockeyMom
New member
I'm afraid I don't have much in the way of advice other than to get a second, third, fourth, etc. opinion. Don't wait, time is too valuable. You need to do everything you can now to know that you've done everything you could have for your daughter.
In the mean time, I'll be praying for you and precious little Zoey.
In the mean time, I'll be praying for you and precious little Zoey.
CFHockeyMom
New member
I'm afraid I don't have much in the way of advice other than to get a second, third, fourth, etc. opinion. Don't wait, time is too valuable. You need to do everything you can now to know that you've done everything you could have for your daughter.
In the mean time, I'll be praying for you and precious little Zoey.
In the mean time, I'll be praying for you and precious little Zoey.
CFHockeyMom
New member
I'm afraid I don't have much in the way of advice other than to get a second, third, fourth, etc. opinion. Don't wait, time is too valuable. You need to do everything you can now to know that you've done everything you could have for your daughter.
In the mean time, I'll be praying for you and precious little Zoey.
In the mean time, I'll be praying for you and precious little Zoey.
CFHockeyMom
New member
I'm afraid I don't have much in the way of advice other than to get a second, third, fourth, etc. opinion. Don't wait, time is too valuable. You need to do everything you can now to know that you've done everything you could have for your daughter.
In the mean time, I'll be praying for you and precious little Zoey.
In the mean time, I'll be praying for you and precious little Zoey.
CFHockeyMom
New member
I'm afraid I don't have much in the way of advice other than to get a second, third, fourth, etc. opinion. Don't wait, time is too valuable. You need to do everything you can now to know that you've done everything you could have for your daughter.
In the mean time, I'll be praying for you and precious little Zoey.
In the mean time, I'll be praying for you and precious little Zoey.
krisjohn53223
New member
I am so sorry to hear this <img src="i/expressions/face-icon-small-sad.gif" border="0"> I found a video you made of Zoey (youtube maybe??) and fell in love with her. I have no advice to give except get a second opinion.
krisjohn53223
New member
I am so sorry to hear this <img src="i/expressions/face-icon-small-sad.gif" border="0"> I found a video you made of Zoey (youtube maybe??) and fell in love with her. I have no advice to give except get a second opinion.