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6 months to live...
- Thread starter Zoey7206
- Start date
Hello,
I hope you got my pm i explained alot of stuff I think will be hopeful. My son was in the same boat until he got the nissen . I don't understand why they would put a mickey button in without doing a Nissen. If they did a nissen it would stop her from vomitting and there for she could get some nurishment from her formula which would soon aid in her to be taken off the tpn. Is she on Actigal (ursidiol)? Does she take a pacifier to help learn the sucking reflex? A pediatric hospital should really help you out ! I hope everything works out for you and your little one, I hope to talk to you soon.
your in my thoughts and prayers!
--------------------------------------------------
Lisa mom to Tommy Luke 1 years old ddf508
I hope you got my pm i explained alot of stuff I think will be hopeful. My son was in the same boat until he got the nissen . I don't understand why they would put a mickey button in without doing a Nissen. If they did a nissen it would stop her from vomitting and there for she could get some nurishment from her formula which would soon aid in her to be taken off the tpn. Is she on Actigal (ursidiol)? Does she take a pacifier to help learn the sucking reflex? A pediatric hospital should really help you out ! I hope everything works out for you and your little one, I hope to talk to you soon.
your in my thoughts and prayers!
--------------------------------------------------
Lisa mom to Tommy Luke 1 years old ddf508
Hello,
I hope you got my pm i explained alot of stuff I think will be hopeful. My son was in the same boat until he got the nissen . I don't understand why they would put a mickey button in without doing a Nissen. If they did a nissen it would stop her from vomitting and there for she could get some nurishment from her formula which would soon aid in her to be taken off the tpn. Is she on Actigal (ursidiol)? Does she take a pacifier to help learn the sucking reflex? A pediatric hospital should really help you out ! I hope everything works out for you and your little one, I hope to talk to you soon.
your in my thoughts and prayers!
--------------------------------------------------
Lisa mom to Tommy Luke 1 years old ddf508
I hope you got my pm i explained alot of stuff I think will be hopeful. My son was in the same boat until he got the nissen . I don't understand why they would put a mickey button in without doing a Nissen. If they did a nissen it would stop her from vomitting and there for she could get some nurishment from her formula which would soon aid in her to be taken off the tpn. Is she on Actigal (ursidiol)? Does she take a pacifier to help learn the sucking reflex? A pediatric hospital should really help you out ! I hope everything works out for you and your little one, I hope to talk to you soon.
your in my thoughts and prayers!
--------------------------------------------------
Lisa mom to Tommy Luke 1 years old ddf508
Hello,
I hope you got my pm i explained alot of stuff I think will be hopeful. My son was in the same boat until he got the nissen . I don't understand why they would put a mickey button in without doing a Nissen. If they did a nissen it would stop her from vomitting and there for she could get some nurishment from her formula which would soon aid in her to be taken off the tpn. Is she on Actigal (ursidiol)? Does she take a pacifier to help learn the sucking reflex? A pediatric hospital should really help you out ! I hope everything works out for you and your little one, I hope to talk to you soon.
your in my thoughts and prayers!
--------------------------------------------------
Lisa mom to Tommy Luke 1 years old ddf508
I hope you got my pm i explained alot of stuff I think will be hopeful. My son was in the same boat until he got the nissen . I don't understand why they would put a mickey button in without doing a Nissen. If they did a nissen it would stop her from vomitting and there for she could get some nurishment from her formula which would soon aid in her to be taken off the tpn. Is she on Actigal (ursidiol)? Does she take a pacifier to help learn the sucking reflex? A pediatric hospital should really help you out ! I hope everything works out for you and your little one, I hope to talk to you soon.
your in my thoughts and prayers!
--------------------------------------------------
Lisa mom to Tommy Luke 1 years old ddf508
Hello,
I hope you got my pm i explained alot of stuff I think will be hopeful. My son was in the same boat until he got the nissen . I don't understand why they would put a mickey button in without doing a Nissen. If they did a nissen it would stop her from vomitting and there for she could get some nurishment from her formula which would soon aid in her to be taken off the tpn. Is she on Actigal (ursidiol)? Does she take a pacifier to help learn the sucking reflex? A pediatric hospital should really help you out ! I hope everything works out for you and your little one, I hope to talk to you soon.
your in my thoughts and prayers!
--------------------------------------------------
Lisa mom to Tommy Luke 1 years old ddf508
I hope you got my pm i explained alot of stuff I think will be hopeful. My son was in the same boat until he got the nissen . I don't understand why they would put a mickey button in without doing a Nissen. If they did a nissen it would stop her from vomitting and there for she could get some nurishment from her formula which would soon aid in her to be taken off the tpn. Is she on Actigal (ursidiol)? Does she take a pacifier to help learn the sucking reflex? A pediatric hospital should really help you out ! I hope everything works out for you and your little one, I hope to talk to you soon.
your in my thoughts and prayers!
--------------------------------------------------
Lisa mom to Tommy Luke 1 years old ddf508
Hello,
I hope you got my pm i explained alot of stuff I think will be hopeful. My son was in the same boat until he got the nissen . I don't understand why they would put a mickey button in without doing a Nissen. If they did a nissen it would stop her from vomitting and there for she could get some nurishment from her formula which would soon aid in her to be taken off the tpn. Is she on Actigal (ursidiol)? Does she take a pacifier to help learn the sucking reflex? A pediatric hospital should really help you out ! I hope everything works out for you and your little one, I hope to talk to you soon.
your in my thoughts and prayers!
--------------------------------------------------
Lisa mom to Tommy Luke 1 years old ddf508
I hope you got my pm i explained alot of stuff I think will be hopeful. My son was in the same boat until he got the nissen . I don't understand why they would put a mickey button in without doing a Nissen. If they did a nissen it would stop her from vomitting and there for she could get some nurishment from her formula which would soon aid in her to be taken off the tpn. Is she on Actigal (ursidiol)? Does she take a pacifier to help learn the sucking reflex? A pediatric hospital should really help you out ! I hope everything works out for you and your little one, I hope to talk to you soon.
your in my thoughts and prayers!
--------------------------------------------------
Lisa mom to Tommy Luke 1 years old ddf508
Hello,
I hope you got my pm i explained alot of stuff I think will be hopeful. My son was in the same boat until he got the nissen . I don't understand why they would put a mickey button in without doing a Nissen. If they did a nissen it would stop her from vomitting and there for she could get some nurishment from her formula which would soon aid in her to be taken off the tpn. Is she on Actigal (ursidiol)? Does she take a pacifier to help learn the sucking reflex? A pediatric hospital should really help you out ! I hope everything works out for you and your little one, I hope to talk to you soon.
your in my thoughts and prayers!
--------------------------------------------------
Lisa mom to Tommy Luke 1 years old ddf508
I hope you got my pm i explained alot of stuff I think will be hopeful. My son was in the same boat until he got the nissen . I don't understand why they would put a mickey button in without doing a Nissen. If they did a nissen it would stop her from vomitting and there for she could get some nurishment from her formula which would soon aid in her to be taken off the tpn. Is she on Actigal (ursidiol)? Does she take a pacifier to help learn the sucking reflex? A pediatric hospital should really help you out ! I hope everything works out for you and your little one, I hope to talk to you soon.
your in my thoughts and prayers!
--------------------------------------------------
Lisa mom to Tommy Luke 1 years old ddf508
S
sdelorenzo
Guest
Sarah,
I am so sorry to hear about what the doctors have told you about your precious Zoey. My daughter got her g-tube and nissan in March. I was pretty nervous about the surgery as I have heard some kids having problems but my daughter has had zero problems with the nissan. Make sure you find the most qualified and experienced surgeon, that makes a difference. Be sure to ask them how many nissan's they have done. Getting the surgery scheduled, etc can take weeks, months so I suggest you get on top of it. My daughter's surgeon was great, but his reception took weeks to call us back about scheduling the surgery. Obviously, you have to make things happen and not put up with any of that business.
I would think that would be the answer for her. Eliminate her throwing up, then she can take feeds continuously through the g-tube. Make sure she is getting the maximum amount of enzymes if she is having trouble gaining weight with just feedings. I also am giving my daughter powder enzymes in a separate pump through the g-tube as she gets her peptimen at night. That way she can digest it better and get extra calories through Benecalorie. e-mail me at sdelorenzo@sbcglobal.net if you have any questions.
Praying for your healing for your sweet daughter, wisdom for the doctors and peace and patience your family.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
I am so sorry to hear about what the doctors have told you about your precious Zoey. My daughter got her g-tube and nissan in March. I was pretty nervous about the surgery as I have heard some kids having problems but my daughter has had zero problems with the nissan. Make sure you find the most qualified and experienced surgeon, that makes a difference. Be sure to ask them how many nissan's they have done. Getting the surgery scheduled, etc can take weeks, months so I suggest you get on top of it. My daughter's surgeon was great, but his reception took weeks to call us back about scheduling the surgery. Obviously, you have to make things happen and not put up with any of that business.
I would think that would be the answer for her. Eliminate her throwing up, then she can take feeds continuously through the g-tube. Make sure she is getting the maximum amount of enzymes if she is having trouble gaining weight with just feedings. I also am giving my daughter powder enzymes in a separate pump through the g-tube as she gets her peptimen at night. That way she can digest it better and get extra calories through Benecalorie. e-mail me at sdelorenzo@sbcglobal.net if you have any questions.
Praying for your healing for your sweet daughter, wisdom for the doctors and peace and patience your family.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
Sarah,
I am so sorry to hear about what the doctors have told you about your precious Zoey. My daughter got her g-tube and nissan in March. I was pretty nervous about the surgery as I have heard some kids having problems but my daughter has had zero problems with the nissan. Make sure you find the most qualified and experienced surgeon, that makes a difference. Be sure to ask them how many nissan's they have done. Getting the surgery scheduled, etc can take weeks, months so I suggest you get on top of it. My daughter's surgeon was great, but his reception took weeks to call us back about scheduling the surgery. Obviously, you have to make things happen and not put up with any of that business.
I would think that would be the answer for her. Eliminate her throwing up, then she can take feeds continuously through the g-tube. Make sure she is getting the maximum amount of enzymes if she is having trouble gaining weight with just feedings. I also am giving my daughter powder enzymes in a separate pump through the g-tube as she gets her peptimen at night. That way she can digest it better and get extra calories through Benecalorie. e-mail me at sdelorenzo@sbcglobal.net if you have any questions.
Praying for your healing for your sweet daughter, wisdom for the doctors and peace and patience your family.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
I am so sorry to hear about what the doctors have told you about your precious Zoey. My daughter got her g-tube and nissan in March. I was pretty nervous about the surgery as I have heard some kids having problems but my daughter has had zero problems with the nissan. Make sure you find the most qualified and experienced surgeon, that makes a difference. Be sure to ask them how many nissan's they have done. Getting the surgery scheduled, etc can take weeks, months so I suggest you get on top of it. My daughter's surgeon was great, but his reception took weeks to call us back about scheduling the surgery. Obviously, you have to make things happen and not put up with any of that business.
I would think that would be the answer for her. Eliminate her throwing up, then she can take feeds continuously through the g-tube. Make sure she is getting the maximum amount of enzymes if she is having trouble gaining weight with just feedings. I also am giving my daughter powder enzymes in a separate pump through the g-tube as she gets her peptimen at night. That way she can digest it better and get extra calories through Benecalorie. e-mail me at sdelorenzo@sbcglobal.net if you have any questions.
Praying for your healing for your sweet daughter, wisdom for the doctors and peace and patience your family.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
Sarah,
I am so sorry to hear about what the doctors have told you about your precious Zoey. My daughter got her g-tube and nissan in March. I was pretty nervous about the surgery as I have heard some kids having problems but my daughter has had zero problems with the nissan. Make sure you find the most qualified and experienced surgeon, that makes a difference. Be sure to ask them how many nissan's they have done. Getting the surgery scheduled, etc can take weeks, months so I suggest you get on top of it. My daughter's surgeon was great, but his reception took weeks to call us back about scheduling the surgery. Obviously, you have to make things happen and not put up with any of that business.
I would think that would be the answer for her. Eliminate her throwing up, then she can take feeds continuously through the g-tube. Make sure she is getting the maximum amount of enzymes if she is having trouble gaining weight with just feedings. I also am giving my daughter powder enzymes in a separate pump through the g-tube as she gets her peptimen at night. That way she can digest it better and get extra calories through Benecalorie. e-mail me at sdelorenzo@sbcglobal.net if you have any questions.
Praying for your healing for your sweet daughter, wisdom for the doctors and peace and patience your family.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
I am so sorry to hear about what the doctors have told you about your precious Zoey. My daughter got her g-tube and nissan in March. I was pretty nervous about the surgery as I have heard some kids having problems but my daughter has had zero problems with the nissan. Make sure you find the most qualified and experienced surgeon, that makes a difference. Be sure to ask them how many nissan's they have done. Getting the surgery scheduled, etc can take weeks, months so I suggest you get on top of it. My daughter's surgeon was great, but his reception took weeks to call us back about scheduling the surgery. Obviously, you have to make things happen and not put up with any of that business.
I would think that would be the answer for her. Eliminate her throwing up, then she can take feeds continuously through the g-tube. Make sure she is getting the maximum amount of enzymes if she is having trouble gaining weight with just feedings. I also am giving my daughter powder enzymes in a separate pump through the g-tube as she gets her peptimen at night. That way she can digest it better and get extra calories through Benecalorie. e-mail me at sdelorenzo@sbcglobal.net if you have any questions.
Praying for your healing for your sweet daughter, wisdom for the doctors and peace and patience your family.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
Sarah,
I am so sorry to hear about what the doctors have told you about your precious Zoey. My daughter got her g-tube and nissan in March. I was pretty nervous about the surgery as I have heard some kids having problems but my daughter has had zero problems with the nissan. Make sure you find the most qualified and experienced surgeon, that makes a difference. Be sure to ask them how many nissan's they have done. Getting the surgery scheduled, etc can take weeks, months so I suggest you get on top of it. My daughter's surgeon was great, but his reception took weeks to call us back about scheduling the surgery. Obviously, you have to make things happen and not put up with any of that business.
I would think that would be the answer for her. Eliminate her throwing up, then she can take feeds continuously through the g-tube. Make sure she is getting the maximum amount of enzymes if she is having trouble gaining weight with just feedings. I also am giving my daughter powder enzymes in a separate pump through the g-tube as she gets her peptimen at night. That way she can digest it better and get extra calories through Benecalorie. e-mail me at sdelorenzo@sbcglobal.net if you have any questions.
Praying for your healing for your sweet daughter, wisdom for the doctors and peace and patience your family.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
I am so sorry to hear about what the doctors have told you about your precious Zoey. My daughter got her g-tube and nissan in March. I was pretty nervous about the surgery as I have heard some kids having problems but my daughter has had zero problems with the nissan. Make sure you find the most qualified and experienced surgeon, that makes a difference. Be sure to ask them how many nissan's they have done. Getting the surgery scheduled, etc can take weeks, months so I suggest you get on top of it. My daughter's surgeon was great, but his reception took weeks to call us back about scheduling the surgery. Obviously, you have to make things happen and not put up with any of that business.
I would think that would be the answer for her. Eliminate her throwing up, then she can take feeds continuously through the g-tube. Make sure she is getting the maximum amount of enzymes if she is having trouble gaining weight with just feedings. I also am giving my daughter powder enzymes in a separate pump through the g-tube as she gets her peptimen at night. That way she can digest it better and get extra calories through Benecalorie. e-mail me at sdelorenzo@sbcglobal.net if you have any questions.
Praying for your healing for your sweet daughter, wisdom for the doctors and peace and patience your family.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
Sarah,
I am so sorry to hear about what the doctors have told you about your precious Zoey. My daughter got her g-tube and nissan in March. I was pretty nervous about the surgery as I have heard some kids having problems but my daughter has had zero problems with the nissan. Make sure you find the most qualified and experienced surgeon, that makes a difference. Be sure to ask them how many nissan's they have done. Getting the surgery scheduled, etc can take weeks, months so I suggest you get on top of it. My daughter's surgeon was great, but his reception took weeks to call us back about scheduling the surgery. Obviously, you have to make things happen and not put up with any of that business.
I would think that would be the answer for her. Eliminate her throwing up, then she can take feeds continuously through the g-tube. Make sure she is getting the maximum amount of enzymes if she is having trouble gaining weight with just feedings. I also am giving my daughter powder enzymes in a separate pump through the g-tube as she gets her peptimen at night. That way she can digest it better and get extra calories through Benecalorie. e-mail me at sdelorenzo@sbcglobal.net if you have any questions.
Praying for your healing for your sweet daughter, wisdom for the doctors and peace and patience your family.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
I am so sorry to hear about what the doctors have told you about your precious Zoey. My daughter got her g-tube and nissan in March. I was pretty nervous about the surgery as I have heard some kids having problems but my daughter has had zero problems with the nissan. Make sure you find the most qualified and experienced surgeon, that makes a difference. Be sure to ask them how many nissan's they have done. Getting the surgery scheduled, etc can take weeks, months so I suggest you get on top of it. My daughter's surgeon was great, but his reception took weeks to call us back about scheduling the surgery. Obviously, you have to make things happen and not put up with any of that business.
I would think that would be the answer for her. Eliminate her throwing up, then she can take feeds continuously through the g-tube. Make sure she is getting the maximum amount of enzymes if she is having trouble gaining weight with just feedings. I also am giving my daughter powder enzymes in a separate pump through the g-tube as she gets her peptimen at night. That way she can digest it better and get extra calories through Benecalorie. e-mail me at sdelorenzo@sbcglobal.net if you have any questions.
Praying for your healing for your sweet daughter, wisdom for the doctors and peace and patience your family.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
Sarah,
I am so sorry to hear about what the doctors have told you about your precious Zoey. My daughter got her g-tube and nissan in March. I was pretty nervous about the surgery as I have heard some kids having problems but my daughter has had zero problems with the nissan. Make sure you find the most qualified and experienced surgeon, that makes a difference. Be sure to ask them how many nissan's they have done. Getting the surgery scheduled, etc can take weeks, months so I suggest you get on top of it. My daughter's surgeon was great, but his reception took weeks to call us back about scheduling the surgery. Obviously, you have to make things happen and not put up with any of that business.
I would think that would be the answer for her. Eliminate her throwing up, then she can take feeds continuously through the g-tube. Make sure she is getting the maximum amount of enzymes if she is having trouble gaining weight with just feedings. I also am giving my daughter powder enzymes in a separate pump through the g-tube as she gets her peptimen at night. That way she can digest it better and get extra calories through Benecalorie. e-mail me at sdelorenzo@sbcglobal.net if you have any questions.
Praying for your healing for your sweet daughter, wisdom for the doctors and peace and patience your family.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
I am so sorry to hear about what the doctors have told you about your precious Zoey. My daughter got her g-tube and nissan in March. I was pretty nervous about the surgery as I have heard some kids having problems but my daughter has had zero problems with the nissan. Make sure you find the most qualified and experienced surgeon, that makes a difference. Be sure to ask them how many nissan's they have done. Getting the surgery scheduled, etc can take weeks, months so I suggest you get on top of it. My daughter's surgeon was great, but his reception took weeks to call us back about scheduling the surgery. Obviously, you have to make things happen and not put up with any of that business.
I would think that would be the answer for her. Eliminate her throwing up, then she can take feeds continuously through the g-tube. Make sure she is getting the maximum amount of enzymes if she is having trouble gaining weight with just feedings. I also am giving my daughter powder enzymes in a separate pump through the g-tube as she gets her peptimen at night. That way she can digest it better and get extra calories through Benecalorie. e-mail me at sdelorenzo@sbcglobal.net if you have any questions.
Praying for your healing for your sweet daughter, wisdom for the doctors and peace and patience your family.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf