anyone had an infant with thick lung secretions? Need support.

ashmomo · Jul 5, 2009

Hi, I have been on this website for a little while now, I also have a 4 year old daughter with CF. My newborn is still in the hospital from MI surgery. Here is what I posted in another category earlier:
My daughter was born May 6 and is still in the hospital recovering from MI surgery. She also has an ileostomy and I am told they will be reconnecting around the 25 of this month. ...my first daughter was also in for 3 weeks (not as long as this time and no surgery, but still rough). I am having a hard time with this one cuz it is such a long time and knowing she has to have another surgery is devestating!
They said she has a 'micro colon' so they have started to take the digested food out of her ostomy bag and are feeding that through her bottom half (mucous fistula) to 'train' her colon. I guess it is something quite new and hasn't been done much, but it makes perfect sense.
I am pumping and she is receiving my breastmilk...she is only getting a small amount (she is now up to 15ml every 3 hours) She is dependent on her IV.
My little one is also having problem with a nasty wet cough. She is being treated with Pulmozyme, Albuteral, and TOBI. Antibiotics were not helping so they discontinued those for a while but have now started another. It sounds terrible and she coughs up alot of thick snotty mucous after her 3 nebs and chest pt all at one time. And now she has Thrust too so she is being treated for that. Soo much for such a little thing! Anyone can check out her blog at <a target=_blank class=ftalternatingbarlinklarge href="http://jordinlyn.blogspot.com">http://jordinlyn.blogspot.com</a> She is adorable!
She is now reconnected after 6 1/2 weeks and they started to feed her yesterday and she is doing really well eating and stolling! That is exciting news!
She had a bronchioscope done on her lungs and they found thick secretions in her lungs and lower airways. They said they don't normally see this in infants. Anyone had an infant with lung secretions? They did a sterile culture and we are waiting for that to come back. Then she may need to be on IV antibiotics, that will be another 2 weeks in the hospital! I just want her home!
I just wanted to move this post here because I am looking for a little support. I am feeling down alot and am having a hard time letting it out to anyone. They just don't really know what I am going through and I am sure some of you do.
I am very glad Jordin is doing so well with everything so far though. She is very strong!

ashmomo · Jul 5, 2009

Hi, I have been on this website for a little while now, I also have a 4 year old daughter with CF. My newborn is still in the hospital from MI surgery. Here is what I posted in another category earlier:
My daughter was born May 6 and is still in the hospital recovering from MI surgery. She also has an ileostomy and I am told they will be reconnecting around the 25 of this month. ...my first daughter was also in for 3 weeks (not as long as this time and no surgery, but still rough). I am having a hard time with this one cuz it is such a long time and knowing she has to have another surgery is devestating!
They said she has a 'micro colon' so they have started to take the digested food out of her ostomy bag and are feeding that through her bottom half (mucous fistula) to 'train' her colon. I guess it is something quite new and hasn't been done much, but it makes perfect sense.
I am pumping and she is receiving my breastmilk...she is only getting a small amount (she is now up to 15ml every 3 hours) She is dependent on her IV.
My little one is also having problem with a nasty wet cough. She is being treated with Pulmozyme, Albuteral, and TOBI. Antibiotics were not helping so they discontinued those for a while but have now started another. It sounds terrible and she coughs up alot of thick snotty mucous after her 3 nebs and chest pt all at one time. And now she has Thrust too so she is being treated for that. Soo much for such a little thing! Anyone can check out her blog at <a target=_blank class=ftalternatingbarlinklarge href="http://jordinlyn.blogspot.com">http://jordinlyn.blogspot.com</a> She is adorable!
She is now reconnected after 6 1/2 weeks and they started to feed her yesterday and she is doing really well eating and stolling! That is exciting news!
She had a bronchioscope done on her lungs and they found thick secretions in her lungs and lower airways. They said they don't normally see this in infants. Anyone had an infant with lung secretions? They did a sterile culture and we are waiting for that to come back. Then she may need to be on IV antibiotics, that will be another 2 weeks in the hospital! I just want her home!
I just wanted to move this post here because I am looking for a little support. I am feeling down alot and am having a hard time letting it out to anyone. They just don't really know what I am going through and I am sure some of you do.
I am very glad Jordin is doing so well with everything so far though. She is very strong!

ashmomo · Jul 5, 2009

Hi, I have been on this website for a little while now, I also have a 4 year old daughter with CF. My newborn is still in the hospital from MI surgery. Here is what I posted in another category earlier:
My daughter was born May 6 and is still in the hospital recovering from MI surgery. She also has an ileostomy and I am told they will be reconnecting around the 25 of this month. ...my first daughter was also in for 3 weeks (not as long as this time and no surgery, but still rough). I am having a hard time with this one cuz it is such a long time and knowing she has to have another surgery is devestating!
They said she has a 'micro colon' so they have started to take the digested food out of her ostomy bag and are feeding that through her bottom half (mucous fistula) to 'train' her colon. I guess it is something quite new and hasn't been done much, but it makes perfect sense.
I am pumping and she is receiving my breastmilk...she is only getting a small amount (she is now up to 15ml every 3 hours) She is dependent on her IV.
My little one is also having problem with a nasty wet cough. She is being treated with Pulmozyme, Albuteral, and TOBI. Antibiotics were not helping so they discontinued those for a while but have now started another. It sounds terrible and she coughs up alot of thick snotty mucous after her 3 nebs and chest pt all at one time. And now she has Thrust too so she is being treated for that. Soo much for such a little thing! Anyone can check out her blog at <a target=_blank class=ftalternatingbarlinklarge href="http://jordinlyn.blogspot.com">http://jordinlyn.blogspot.com</a> She is adorable!
She is now reconnected after 6 1/2 weeks and they started to feed her yesterday and she is doing really well eating and stolling! That is exciting news!
She had a bronchioscope done on her lungs and they found thick secretions in her lungs and lower airways. They said they don't normally see this in infants. Anyone had an infant with lung secretions? They did a sterile culture and we are waiting for that to come back. Then she may need to be on IV antibiotics, that will be another 2 weeks in the hospital! I just want her home!
I just wanted to move this post here because I am looking for a little support. I am feeling down alot and am having a hard time letting it out to anyone. They just don't really know what I am going through and I am sure some of you do.
I am very glad Jordin is doing so well with everything so far though. She is very strong!

ashmomo · Jul 5, 2009

Hi, I have been on this website for a little while now, I also have a 4 year old daughter with CF. My newborn is still in the hospital from MI surgery. Here is what I posted in another category earlier:
My daughter was born May 6 and is still in the hospital recovering from MI surgery. She also has an ileostomy and I am told they will be reconnecting around the 25 of this month. ...my first daughter was also in for 3 weeks (not as long as this time and no surgery, but still rough). I am having a hard time with this one cuz it is such a long time and knowing she has to have another surgery is devestating!
They said she has a 'micro colon' so they have started to take the digested food out of her ostomy bag and are feeding that through her bottom half (mucous fistula) to 'train' her colon. I guess it is something quite new and hasn't been done much, but it makes perfect sense.
I am pumping and she is receiving my breastmilk...she is only getting a small amount (she is now up to 15ml every 3 hours) She is dependent on her IV.
My little one is also having problem with a nasty wet cough. She is being treated with Pulmozyme, Albuteral, and TOBI. Antibiotics were not helping so they discontinued those for a while but have now started another. It sounds terrible and she coughs up alot of thick snotty mucous after her 3 nebs and chest pt all at one time. And now she has Thrust too so she is being treated for that. Soo much for such a little thing! Anyone can check out her blog at <a target=_blank class=ftalternatingbarlinklarge href="http://jordinlyn.blogspot.com">http://jordinlyn.blogspot.com</a> She is adorable!
She is now reconnected after 6 1/2 weeks and they started to feed her yesterday and she is doing really well eating and stolling! That is exciting news!
She had a bronchioscope done on her lungs and they found thick secretions in her lungs and lower airways. They said they don't normally see this in infants. Anyone had an infant with lung secretions? They did a sterile culture and we are waiting for that to come back. Then she may need to be on IV antibiotics, that will be another 2 weeks in the hospital! I just want her home!
I just wanted to move this post here because I am looking for a little support. I am feeling down alot and am having a hard time letting it out to anyone. They just don't really know what I am going through and I am sure some of you do.
I am very glad Jordin is doing so well with everything so far though. She is very strong!

ashmomo · Jul 5, 2009

Hi, I have been on this website for a little while now, I also have a 4 year old daughter with CF. My newborn is still in the hospital from MI surgery. Here is what I posted in another category earlier:
 My daughter was born May 6 and is still in the hospital recovering from MI surgery. She also has an ileostomy and I am told they will be reconnecting around the 25 of this month. ...my first daughter was also in for 3 weeks (not as long as this time and no surgery, but still rough). I am having a hard time with this one cuz it is such a long time and knowing she has to have another surgery is devestating!
 They said she has a 'micro colon' so they have started to take the digested food out of her ostomy bag and are feeding that through her bottom half (mucous fistula) to 'train' her colon. I guess it is something quite new and hasn't been done much, but it makes perfect sense.
 I am pumping and she is receiving my breastmilk...she is only getting a small amount (she is now up to 15ml every 3 hours) She is dependent on her IV.
 My little one is also having problem with a nasty wet cough. She is being treated with Pulmozyme, Albuteral, and TOBI. Antibiotics were not helping so they discontinued those for a while but have now started another. It sounds terrible and she coughs up alot of thick snotty mucous after her 3 nebs and chest pt all at one time. And now she has Thrust too so she is being treated for that. Soo much for such a little thing! Anyone can check out her blog at <a target=_blank class=ftalternatingbarlinklarge href="http://jordinlyn.blogspot.com">http://jordinlyn.blogspot.com</a> She is adorable!
 She is now reconnected after 6 1/2 weeks and they started to feed her yesterday and she is doing really well eating and stolling! That is exciting news!
 She had a bronchioscope done on her lungs and they found thick secretions in her lungs and lower airways. They said they don't normally see this in infants. Anyone had an infant with lung secretions? They did a sterile culture and we are waiting for that to come back. Then she may need to be on IV antibiotics, that will be another 2 weeks in the hospital! I just want her home!
 I just wanted to move this post here because I am looking for a little support. I am feeling down alot and am having a hard time letting it out to anyone. They just don't really know what I am going through and I am sure some of you do.
 I am very glad Jordin is doing so well with everything so far though. She is very strong!

07chris07 · Jul 5, 2009

Hi,
My son was born June 17th,2009. He also was born with MI. He had 3 surgeries to finally correct the blockage. Very similar procedures to your daughters.I know how hard it can be. From the day my son was born till he was almost 4 months old, he was in the hospital. So I feel your pain. He was our first born so it was very overwhelming for me and my husband 1st being new parents and then all these health problems. I also Pumped my milk for that whole time and my son as well was relying on Iv to keep him going. One thing we were pretty lucky with was that he really didn't have any noticeable lung problems.So I can understand how it seem like so much.Like it's one problem after another. Just know that soon he will get to come home, and this will all be in the past. Try and stay strong

. Best wishes to you and your Family, hopefully she will be home before you know it.

Christine

07chris07 · Jul 5, 2009

Hi,
My son was born June 17th,2009. He also was born with MI. He had 3 surgeries to finally correct the blockage. Very similar procedures to your daughters.I know how hard it can be. From the day my son was born till he was almost 4 months old, he was in the hospital. So I feel your pain. He was our first born so it was very overwhelming for me and my husband 1st being new parents and then all these health problems. I also Pumped my milk for that whole time and my son as well was relying on Iv to keep him going. One thing we were pretty lucky with was that he really didn't have any noticeable lung problems.So I can understand how it seem like so much.Like it's one problem after another. Just know that soon he will get to come home, and this will all be in the past. Try and stay strong

. Best wishes to you and your Family, hopefully she will be home before you know it.

Christine

07chris07 · Jul 5, 2009

Hi,
My son was born June 17th,2009. He also was born with MI. He had 3 surgeries to finally correct the blockage. Very similar procedures to your daughters.I know how hard it can be. From the day my son was born till he was almost 4 months old, he was in the hospital. So I feel your pain. He was our first born so it was very overwhelming for me and my husband 1st being new parents and then all these health problems. I also Pumped my milk for that whole time and my son as well was relying on Iv to keep him going. One thing we were pretty lucky with was that he really didn't have any noticeable lung problems.So I can understand how it seem like so much.Like it's one problem after another. Just know that soon he will get to come home, and this will all be in the past. Try and stay strong

. Best wishes to you and your Family, hopefully she will be home before you know it.

Christine

07chris07 · Jul 5, 2009

Hi,
My son was born June 17th,2009. He also was born with MI. He had 3 surgeries to finally correct the blockage. Very similar procedures to your daughters.I know how hard it can be. From the day my son was born till he was almost 4 months old, he was in the hospital. So I feel your pain. He was our first born so it was very overwhelming for me and my husband 1st being new parents and then all these health problems. I also Pumped my milk for that whole time and my son as well was relying on Iv to keep him going. One thing we were pretty lucky with was that he really didn't have any noticeable lung problems.So I can understand how it seem like so much.Like it's one problem after another. Just know that soon he will get to come home, and this will all be in the past. Try and stay strong

. Best wishes to you and your Family, hopefully she will be home before you know it.

Christine

07chris07 · Jul 5, 2009

Hi,
 My son was born June 17th,2009. He also was born with MI. He had 3 surgeries to finally correct the blockage. Very similar procedures to your daughters.I know how hard it can be. From the day my son was born till he was almost 4 months old, he was in the hospital. So I feel your pain. He was our first born so it was very overwhelming for me and my husband 1st being new parents and then all these health problems. I also Pumped my milk for that whole time and my son as well was relying on Iv to keep him going. One thing we were pretty lucky with was that he really didn't have any noticeable lung problems.So I can understand how it seem like so much.Like it's one problem after another. Just know that soon he will get to come home, and this will all be in the past. Try and stay strong

. Best wishes to you and your Family, hopefully she will be home before you know it.
 
 Christine

Mommafirst · Jul 5, 2009

I'm so sorry to hear how much you are dealing with right now with your little one. <img src="i/expressions/face-icon-small-sad.gif" border="0"> CF is a very difficult and unpredictable disease. You have one child who didn't have infant lung issues and then you can have a second who does.

My completely uneducated and shot in the dark guess is that maybe Jordin picked up a CF-type bug in the NICU where strong bugs are more prevalent. Hopefully, with the right mix of antibiotics and lots of love, Jordin will get over the hump and will do better as she grows stronger.

(((HUGS)))

CF has a way of catching you by surprise. You see your healthy looking kiddo and everything is going along pretty normally and then *wham* you hit a brick wall than takes the wind out of your sails for awhile, and then somehow we return to that happy place again, only to hit the brick wall again at some unkown time.

Mommafirst · Jul 5, 2009

I'm so sorry to hear how much you are dealing with right now with your little one. <img src="i/expressions/face-icon-small-sad.gif" border="0"> CF is a very difficult and unpredictable disease. You have one child who didn't have infant lung issues and then you can have a second who does.

My completely uneducated and shot in the dark guess is that maybe Jordin picked up a CF-type bug in the NICU where strong bugs are more prevalent. Hopefully, with the right mix of antibiotics and lots of love, Jordin will get over the hump and will do better as she grows stronger.

(((HUGS)))

CF has a way of catching you by surprise. You see your healthy looking kiddo and everything is going along pretty normally and then *wham* you hit a brick wall than takes the wind out of your sails for awhile, and then somehow we return to that happy place again, only to hit the brick wall again at some unkown time.

Mommafirst · Jul 5, 2009

I'm so sorry to hear how much you are dealing with right now with your little one. <img src="i/expressions/face-icon-small-sad.gif" border="0"> CF is a very difficult and unpredictable disease. You have one child who didn't have infant lung issues and then you can have a second who does.

My completely uneducated and shot in the dark guess is that maybe Jordin picked up a CF-type bug in the NICU where strong bugs are more prevalent. Hopefully, with the right mix of antibiotics and lots of love, Jordin will get over the hump and will do better as she grows stronger.

(((HUGS)))

CF has a way of catching you by surprise. You see your healthy looking kiddo and everything is going along pretty normally and then *wham* you hit a brick wall than takes the wind out of your sails for awhile, and then somehow we return to that happy place again, only to hit the brick wall again at some unkown time.

Mommafirst · Jul 5, 2009

I'm so sorry to hear how much you are dealing with right now with your little one. <img src="i/expressions/face-icon-small-sad.gif" border="0"> CF is a very difficult and unpredictable disease. You have one child who didn't have infant lung issues and then you can have a second who does.

My completely uneducated and shot in the dark guess is that maybe Jordin picked up a CF-type bug in the NICU where strong bugs are more prevalent. Hopefully, with the right mix of antibiotics and lots of love, Jordin will get over the hump and will do better as she grows stronger.

(((HUGS)))

CF has a way of catching you by surprise. You see your healthy looking kiddo and everything is going along pretty normally and then *wham* you hit a brick wall than takes the wind out of your sails for awhile, and then somehow we return to that happy place again, only to hit the brick wall again at some unkown time.

Mommafirst · Jul 5, 2009

I'm so sorry to hear how much you are dealing with right now with your little one. <img src="i/expressions/face-icon-small-sad.gif" border="0"> CF is a very difficult and unpredictable disease. You have one child who didn't have infant lung issues and then you can have a second who does.
 
 My completely uneducated and shot in the dark guess is that maybe Jordin picked up a CF-type bug in the NICU where strong bugs are more prevalent. Hopefully, with the right mix of antibiotics and lots of love, Jordin will get over the hump and will do better as she grows stronger.
 
 (((HUGS)))
 
 CF has a way of catching you by surprise. You see your healthy looking kiddo and everything is going along pretty normally and then *wham* you hit a brick wall than takes the wind out of your sails for awhile, and then somehow we return to that happy place again, only to hit the brick wall again at some unkown time.

amber682 · Jul 5, 2009

I'm sorry you're going through so much right now. We just got home last month from a 5 week stay. I agree with Heather that she may just have picked up a bug while in the hospital. My daughter picked up acinedobacter while we were in, fortunately it was treated and hasn't shown up since.

Also, along with surgeries and bronchs comes being intubated. That can really stir things up. My daughter was really junky for a few days after her bronch/lavage and her x-rays looked awful. They did a course of clindamycin and that cleared right up.

I know you just want to go home, hang in there!

amber682 · Jul 5, 2009

I'm sorry you're going through so much right now. We just got home last month from a 5 week stay. I agree with Heather that she may just have picked up a bug while in the hospital. My daughter picked up acinedobacter while we were in, fortunately it was treated and hasn't shown up since.

Also, along with surgeries and bronchs comes being intubated. That can really stir things up. My daughter was really junky for a few days after her bronch/lavage and her x-rays looked awful. They did a course of clindamycin and that cleared right up.

I know you just want to go home, hang in there!

amber682 · Jul 5, 2009

I'm sorry you're going through so much right now. We just got home last month from a 5 week stay. I agree with Heather that she may just have picked up a bug while in the hospital. My daughter picked up acinedobacter while we were in, fortunately it was treated and hasn't shown up since.

Also, along with surgeries and bronchs comes being intubated. That can really stir things up. My daughter was really junky for a few days after her bronch/lavage and her x-rays looked awful. They did a course of clindamycin and that cleared right up.

I know you just want to go home, hang in there!

amber682 · Jul 5, 2009

I'm sorry you're going through so much right now. We just got home last month from a 5 week stay. I agree with Heather that she may just have picked up a bug while in the hospital. My daughter picked up acinedobacter while we were in, fortunately it was treated and hasn't shown up since.

Also, along with surgeries and bronchs comes being intubated. That can really stir things up. My daughter was really junky for a few days after her bronch/lavage and her x-rays looked awful. They did a course of clindamycin and that cleared right up.

I know you just want to go home, hang in there!

amber682 · Jul 5, 2009

I'm sorry you're going through so much right now. We just got home last month from a 5 week stay. I agree with Heather that she may just have picked up a bug while in the hospital. My daughter picked up acinedobacter while we were in, fortunately it was treated and hasn't shown up since.
 
 Also, along with surgeries and bronchs comes being intubated. That can really stir things up. My daughter was really junky for a few days after her bronch/lavage and her x-rays looked awful. They did a course of clindamycin and that cleared right up.
 
 I know you just want to go home, hang in there!

anyone had an infant with thick lung secretions? Need support.

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