Admitted AGAIN

[amityvsvenom]

This is my first time posting on this forum, I have been reading for awhile just never reached out to anyone.

Skye is 5 1/2 months old. We have had a horrible 5 months. She has been in hospitals more than she hasnt been. At birth she had to have intestinal surgery and came out with a g tube, ileostomy and mucus fistula. Her second surgery was the take down.
She was then back in the hospital for RSV shortly after the second hospital stay. Now we are back again, after only a month home again. She had her third surgery, a bronchoscopy and a central line put in. She is on IV antibiotics for the next 2 weeks. We are hoping after 1 week on it here at the hospital we will get to go home and finish the antibiotics with home care.
She also have liver disease. We havent had the easiest life and I am just hoping somehow things will get easier for us all. I never imagined I would ever have a daughter with a fatal disease. I think just now I am starting to "grieve" about it.

Mommy to Skye..5 months old, DDF508, g-tube, MRSA, Chryseobacterium, Central Line

 

[amityvsvenom]

This is my first time posting on this forum, I have been reading for awhile just never reached out to anyone.

Skye is 5 1/2 months old. We have had a horrible 5 months. She has been in hospitals more than she hasnt been. At birth she had to have intestinal surgery and came out with a g tube, ileostomy and mucus fistula. Her second surgery was the take down.
She was then back in the hospital for RSV shortly after the second hospital stay. Now we are back again, after only a month home again. She had her third surgery, a bronchoscopy and a central line put in. She is on IV antibiotics for the next 2 weeks. We are hoping after 1 week on it here at the hospital we will get to go home and finish the antibiotics with home care.
She also have liver disease. We havent had the easiest life and I am just hoping somehow things will get easier for us all. I never imagined I would ever have a daughter with a fatal disease. I think just now I am starting to "grieve" about it.

Mommy to Skye..5 months old, DDF508, g-tube, MRSA, Chryseobacterium, Central Line

 

[amityvsvenom]

This is my first time posting on this forum, I have been reading for awhile just never reached out to anyone.

Skye is 5 1/2 months old. We have had a horrible 5 months. She has been in hospitals more than she hasnt been. At birth she had to have intestinal surgery and came out with a g tube, ileostomy and mucus fistula. Her second surgery was the take down.
She was then back in the hospital for RSV shortly after the second hospital stay. Now we are back again, after only a month home again. She had her third surgery, a bronchoscopy and a central line put in. She is on IV antibiotics for the next 2 weeks. We are hoping after 1 week on it here at the hospital we will get to go home and finish the antibiotics with home care.
She also have liver disease. We havent had the easiest life and I am just hoping somehow things will get easier for us all. I never imagined I would ever have a daughter with a fatal disease. I think just now I am starting to "grieve" about it.

Mommy to Skye..5 months old, DDF508, g-tube, MRSA, Chryseobacterium, Central Line

 

[amityvsvenom]

This is my first time posting on this forum, I have been reading for awhile just never reached out to anyone.

Skye is 5 1/2 months old. We have had a horrible 5 months. She has been in hospitals more than she hasnt been. At birth she had to have intestinal surgery and came out with a g tube, ileostomy and mucus fistula. Her second surgery was the take down.
She was then back in the hospital for RSV shortly after the second hospital stay. Now we are back again, after only a month home again. She had her third surgery, a bronchoscopy and a central line put in. She is on IV antibiotics for the next 2 weeks. We are hoping after 1 week on it here at the hospital we will get to go home and finish the antibiotics with home care.
She also have liver disease. We havent had the easiest life and I am just hoping somehow things will get easier for us all. I never imagined I would ever have a daughter with a fatal disease. I think just now I am starting to "grieve" about it.

Mommy to Skye..5 months old, DDF508, g-tube, MRSA, Chryseobacterium, Central Line

 

[amityvsvenom]

This is my first time posting on this forum, I have been reading for awhile just never reached out to anyone.
<br />
<br />Skye is 5 1/2 months old. We have had a horrible 5 months. She has been in hospitals more than she hasnt been. At birth she had to have intestinal surgery and came out with a g tube, ileostomy and mucus fistula. Her second surgery was the take down.
<br />She was then back in the hospital for RSV shortly after the second hospital stay. Now we are back again, after only a month home again. She had her third surgery, a bronchoscopy and a central line put in. She is on IV antibiotics for the next 2 weeks. We are hoping after 1 week on it here at the hospital we will get to go home and finish the antibiotics with home care.
<br />She also have liver disease. We havent had the easiest life and I am just hoping somehow things will get easier for us all. I never imagined I would ever have a daughter with a fatal disease. I think just now I am starting to "grieve" about it.
<br />
<br />Mommy to Skye..5 months old, DDF508, g-tube, MRSA, Chryseobacterium, Central Line

 

[JazzysMom]

First of all Welcome to the forum (officially)

Secondly Congratulations on that Bundle of Joy!

Thirdly.....it sounds like life has started out rough for y'all. I know its discouraging, heart breaking & overwhelming.

I dont have any words of wisdom except to take one day at a time....maybe even one hour or minute if its an exceptionally rough day. During those really rough days...try to take a moment & focus on your baby by looking past the cough, the g tube, the meds & whatever else reminds you of CF.

Look at that face & just love her!

HUGS to you & please whenever you need to vent, cry, scream, laugh, share or just talk.....someone is here. There are many parents who have been where you are now & they survived it!!

 

[JazzysMom]

First of all Welcome to the forum (officially)

Secondly Congratulations on that Bundle of Joy!

Thirdly.....it sounds like life has started out rough for y'all. I know its discouraging, heart breaking & overwhelming.

I dont have any words of wisdom except to take one day at a time....maybe even one hour or minute if its an exceptionally rough day. During those really rough days...try to take a moment & focus on your baby by looking past the cough, the g tube, the meds & whatever else reminds you of CF.

Look at that face & just love her!

HUGS to you & please whenever you need to vent, cry, scream, laugh, share or just talk.....someone is here. There are many parents who have been where you are now & they survived it!!

 

[JazzysMom]

First of all Welcome to the forum (officially)

Secondly Congratulations on that Bundle of Joy!

Thirdly.....it sounds like life has started out rough for y'all. I know its discouraging, heart breaking & overwhelming.

I dont have any words of wisdom except to take one day at a time....maybe even one hour or minute if its an exceptionally rough day. During those really rough days...try to take a moment & focus on your baby by looking past the cough, the g tube, the meds & whatever else reminds you of CF.

Look at that face & just love her!

HUGS to you & please whenever you need to vent, cry, scream, laugh, share or just talk.....someone is here. There are many parents who have been where you are now & they survived it!!

 

[JazzysMom]

First of all Welcome to the forum (officially)

Secondly Congratulations on that Bundle of Joy!

Thirdly.....it sounds like life has started out rough for y'all. I know its discouraging, heart breaking & overwhelming.

I dont have any words of wisdom except to take one day at a time....maybe even one hour or minute if its an exceptionally rough day. During those really rough days...try to take a moment & focus on your baby by looking past the cough, the g tube, the meds & whatever else reminds you of CF.

Look at that face & just love her!

HUGS to you & please whenever you need to vent, cry, scream, laugh, share or just talk.....someone is here. There are many parents who have been where you are now & they survived it!!

 

[JazzysMom]

First of all Welcome to the forum (officially)
<br />
<br />Secondly Congratulations on that Bundle of Joy!
<br />
<br />Thirdly.....it sounds like life has started out rough for y'all. I know its discouraging, heart breaking & overwhelming.
<br />
<br />I dont have any words of wisdom except to take one day at a time....maybe even one hour or minute if its an exceptionally rough day. During those really rough days...try to take a moment & focus on your baby by looking past the cough, the g tube, the meds & whatever else reminds you of CF.
<br />
<br />Look at that face & just love her!
<br />
<br />HUGS to you & please whenever you need to vent, cry, scream, laugh, share or just talk.....someone is here. There are many parents who have been where you are now & they survived it!!

 

[amityvsvenom]

Thank you very much. I am having some difficulty even taking it day by day. I dont even know anyone else personally with CF so I have no one to vent/talk to about all the problems we are going through.

And we recently moved out of state and we are having a hell of a time finding a hospital that I like. Porbably because I was so trusting and comfortable with the last hospital she spent all her time at. But this hospital we are in right now is not my favorite. I am hoping the next hospital we try will be a bit more welcoming. Do you have DDF508? I was told a while back that is was the most common...the DF508 but with two its the most severe? I have no idea, I am still really learning about all the little details. Everyone says I look into it too much but I really just want to know every little thing that I can possible know about all of this.

 

[amityvsvenom]

Thank you very much. I am having some difficulty even taking it day by day. I dont even know anyone else personally with CF so I have no one to vent/talk to about all the problems we are going through.

And we recently moved out of state and we are having a hell of a time finding a hospital that I like. Porbably because I was so trusting and comfortable with the last hospital she spent all her time at. But this hospital we are in right now is not my favorite. I am hoping the next hospital we try will be a bit more welcoming. Do you have DDF508? I was told a while back that is was the most common...the DF508 but with two its the most severe? I have no idea, I am still really learning about all the little details. Everyone says I look into it too much but I really just want to know every little thing that I can possible know about all of this.

 

[amityvsvenom]

Thank you very much. I am having some difficulty even taking it day by day. I dont even know anyone else personally with CF so I have no one to vent/talk to about all the problems we are going through.

And we recently moved out of state and we are having a hell of a time finding a hospital that I like. Porbably because I was so trusting and comfortable with the last hospital she spent all her time at. But this hospital we are in right now is not my favorite. I am hoping the next hospital we try will be a bit more welcoming. Do you have DDF508? I was told a while back that is was the most common...the DF508 but with two its the most severe? I have no idea, I am still really learning about all the little details. Everyone says I look into it too much but I really just want to know every little thing that I can possible know about all of this.

 

[amityvsvenom]

Thank you very much. I am having some difficulty even taking it day by day. I dont even know anyone else personally with CF so I have no one to vent/talk to about all the problems we are going through.

And we recently moved out of state and we are having a hell of a time finding a hospital that I like. Porbably because I was so trusting and comfortable with the last hospital she spent all her time at. But this hospital we are in right now is not my favorite. I am hoping the next hospital we try will be a bit more welcoming. Do you have DDF508? I was told a while back that is was the most common...the DF508 but with two its the most severe? I have no idea, I am still really learning about all the little details. Everyone says I look into it too much but I really just want to know every little thing that I can possible know about all of this.

 

[amityvsvenom]

Thank you very much. I am having some difficulty even taking it day by day. I dont even know anyone else personally with CF so I have no one to vent/talk to about all the problems we are going through.
<br />
<br />And we recently moved out of state and we are having a hell of a time finding a hospital that I like. Porbably because I was so trusting and comfortable with the last hospital she spent all her time at. But this hospital we are in right now is not my favorite. I am hoping the next hospital we try will be a bit more welcoming. Do you have DDF508? I was told a while back that is was the most common...the DF508 but with two its the most severe? I have no idea, I am still really learning about all the little details. Everyone says I look into it too much but I really just want to know every little thing that I can possible know about all of this.

 

[JazzysMom]

Yes I have DDF508. It is the most common gene. Its questionable as to the most severe. The difference is that its a gene that involved lungs AND digestive & sometimes that alone might be considered more severe.

It is important that you find a hospital that you are comfortable with. Just remember tho that you need to be objective & what is "comfortable" for you might not always be whats best for your child........

HUGS

 

[JazzysMom]

Yes I have DDF508. It is the most common gene. Its questionable as to the most severe. The difference is that its a gene that involved lungs AND digestive & sometimes that alone might be considered more severe.

It is important that you find a hospital that you are comfortable with. Just remember tho that you need to be objective & what is "comfortable" for you might not always be whats best for your child........

HUGS

 

[JazzysMom]

Yes I have DDF508. It is the most common gene. Its questionable as to the most severe. The difference is that its a gene that involved lungs AND digestive & sometimes that alone might be considered more severe.

It is important that you find a hospital that you are comfortable with. Just remember tho that you need to be objective & what is "comfortable" for you might not always be whats best for your child........

HUGS

 

[JazzysMom]

Yes I have DDF508. It is the most common gene. Its questionable as to the most severe. The difference is that its a gene that involved lungs AND digestive & sometimes that alone might be considered more severe.

It is important that you find a hospital that you are comfortable with. Just remember tho that you need to be objective & what is "comfortable" for you might not always be whats best for your child........

HUGS

 

[JazzysMom]

Yes I have DDF508. It is the most common gene. Its questionable as to the most severe. The difference is that its a gene that involved lungs AND digestive & sometimes that alone might be considered more severe.
<br />
<br />It is important that you find a hospital that you are comfortable with. Just remember tho that you need to be objective & what is "comfortable" for you might not always be whats best for your child........
<br />
<br />HUGS