Lilly in the hospital

nlwlrandall · Nov 2, 2007

I haven't been on in quite a while but I needed some support. Our 12 week old daughter Lilly has been hospitalized because of an exacerbation of her CF. WE're at Children's in Minneapolis MN.

They found today among a couple others Pseudomonas Aeruginosa in her lungs. She also has ecoli, a yeast infection and a couple others that are mild. Her cough is terrible!

She's on Albuterol and Toby nebs as well as toby antibioltics. She gets nebs 5 times a day along with bds 5 times a day. They also started her on enzyme treatments with every feeding and vitamin supplements. She is also on extra calorie Nutramagin because she is only in the 3rd percentile.

Because she has DeltaF508 AND R117h we were told that combination is usually associated with panceratic sufficincy. When we first did her enzyme tests at 3 weeks old it came up sufficient. Now it appears she may no longer be pancreatic sufficient.

Her Caring Bridge website to see my journal and more about what's going on as well as pictures of her visit... <a target=_blank class=ftalternatingbarlinklarge href="http://www.caringbride.org/visit/lillianrandall">Lilly's Website</a>

So anyway we're pretty exhausted, sad and scared. Could use some support
thanks =)
Laura

nlwlrandall · Nov 2, 2007

I haven't been on in quite a while but I needed some support. Our 12 week old daughter Lilly has been hospitalized because of an exacerbation of her CF. WE're at Children's in Minneapolis MN.

They found today among a couple others Pseudomonas Aeruginosa in her lungs. She also has ecoli, a yeast infection and a couple others that are mild. Her cough is terrible!

She's on Albuterol and Toby nebs as well as toby antibioltics. She gets nebs 5 times a day along with bds 5 times a day. They also started her on enzyme treatments with every feeding and vitamin supplements. She is also on extra calorie Nutramagin because she is only in the 3rd percentile.

Because she has DeltaF508 AND R117h we were told that combination is usually associated with panceratic sufficincy. When we first did her enzyme tests at 3 weeks old it came up sufficient. Now it appears she may no longer be pancreatic sufficient.

Her Caring Bridge website to see my journal and more about what's going on as well as pictures of her visit... <a target=_blank class=ftalternatingbarlinklarge href="http://www.caringbride.org/visit/lillianrandall">Lilly's Website</a>

So anyway we're pretty exhausted, sad and scared. Could use some support
thanks =)
Laura

nlwlrandall · Nov 2, 2007

I haven't been on in quite a while but I needed some support. Our 12 week old daughter Lilly has been hospitalized because of an exacerbation of her CF. WE're at Children's in Minneapolis MN.

They found today among a couple others Pseudomonas Aeruginosa in her lungs. She also has ecoli, a yeast infection and a couple others that are mild. Her cough is terrible!

She's on Albuterol and Toby nebs as well as toby antibioltics. She gets nebs 5 times a day along with bds 5 times a day. They also started her on enzyme treatments with every feeding and vitamin supplements. She is also on extra calorie Nutramagin because she is only in the 3rd percentile.

Because she has DeltaF508 AND R117h we were told that combination is usually associated with panceratic sufficincy. When we first did her enzyme tests at 3 weeks old it came up sufficient. Now it appears she may no longer be pancreatic sufficient.

Her Caring Bridge website to see my journal and more about what's going on as well as pictures of her visit... <a target=_blank class=ftalternatingbarlinklarge href="http://www.caringbride.org/visit/lillianrandall">Lilly's Website</a>

So anyway we're pretty exhausted, sad and scared. Could use some support
thanks =)
Laura

nlwlrandall · Nov 2, 2007

I haven't been on in quite a while but I needed some support. Our 12 week old daughter Lilly has been hospitalized because of an exacerbation of her CF. WE're at Children's in Minneapolis MN.

They found today among a couple others Pseudomonas Aeruginosa in her lungs. She also has ecoli, a yeast infection and a couple others that are mild. Her cough is terrible!

She's on Albuterol and Toby nebs as well as toby antibioltics. She gets nebs 5 times a day along with bds 5 times a day. They also started her on enzyme treatments with every feeding and vitamin supplements. She is also on extra calorie Nutramagin because she is only in the 3rd percentile.

Because she has DeltaF508 AND R117h we were told that combination is usually associated with panceratic sufficincy. When we first did her enzyme tests at 3 weeks old it came up sufficient. Now it appears she may no longer be pancreatic sufficient.

Her Caring Bridge website to see my journal and more about what's going on as well as pictures of her visit... <a target=_blank class=ftalternatingbarlinklarge href="http://www.caringbride.org/visit/lillianrandall">Lilly's Website</a>

So anyway we're pretty exhausted, sad and scared. Could use some support
thanks =)
Laura

nlwlrandall · Nov 2, 2007

I haven't been on in quite a while but I needed some support. Our 12 week old daughter Lilly has been hospitalized because of an exacerbation of her CF. WE're at Children's in Minneapolis MN.

They found today among a couple others Pseudomonas Aeruginosa in her lungs. She also has ecoli, a yeast infection and a couple others that are mild. Her cough is terrible!

She's on Albuterol and Toby nebs as well as toby antibioltics. She gets nebs 5 times a day along with bds 5 times a day. They also started her on enzyme treatments with every feeding and vitamin supplements. She is also on extra calorie Nutramagin because she is only in the 3rd percentile.

Because she has DeltaF508 AND R117h we were told that combination is usually associated with panceratic sufficincy. When we first did her enzyme tests at 3 weeks old it came up sufficient. Now it appears she may no longer be pancreatic sufficient.

Her Caring Bridge website to see my journal and more about what's going on as well as pictures of her visit... <a target=_blank class=ftalternatingbarlinklarge href="http://www.caringbride.org/visit/lillianrandall">Lilly's Website</a>

So anyway we're pretty exhausted, sad and scared. Could use some support
thanks =)
Laura

Alyssa · Nov 2, 2007

OMG!!! I am soooooo sorry !! How awful for you... wow, that sure happened fast! everything all at once.

Anything I can do, please let me know -- I know you have my email -- I'll send you one from there.

Alyssa · Nov 2, 2007

OMG!!! I am soooooo sorry !! How awful for you... wow, that sure happened fast! everything all at once.

Anything I can do, please let me know -- I know you have my email -- I'll send you one from there.

Alyssa · Nov 2, 2007

OMG!!! I am soooooo sorry !! How awful for you... wow, that sure happened fast! everything all at once.

Anything I can do, please let me know -- I know you have my email -- I'll send you one from there.

Alyssa · Nov 2, 2007

OMG!!! I am soooooo sorry !! How awful for you... wow, that sure happened fast! everything all at once.

Anything I can do, please let me know -- I know you have my email -- I'll send you one from there.

Alyssa · Nov 2, 2007

OMG!!! I am soooooo sorry !! How awful for you... wow, that sure happened fast! everything all at once.

Anything I can do, please let me know -- I know you have my email -- I'll send you one from there.

Ratatosk · Nov 2, 2007

I just looked at your caringbridge site -- When Max was 2 months old he developed such a horrible cough that I'd have to hold him over sinks, floor drains, etc. because he'd cough so hard he'd hurl. He actually spent his first 4 weeks of life at children's recovering from surgery to repair an obstruction due to meconium illeus. He went home from the hospital with the start of a cough, ended up in the local hospital for two weeks. Still had the cough which progressed to the vomiting stage. Couldn't take him anywhere! He'd cough and hurl. Took him to the local cf doctor for a two month check up and asked about the cough. The doctor told me the cough was normal -- "that's what cfers do". A few weeks later, we went back to Minneapolis for a recheck -- his CF doctor YELLED at us. HE had bronchitis -- didn't we know he could've ended up back in the hospital. Put him on Tobi, septra, bds 4 times a day.... Anyway, sorry this is so long. But he cultured the enterbactor cholae (sp). Got pseudo a month later.

But the only time he had that nasty cough was when he cultured the enterbactor -- figure he must've gotten it in the hospital. To this day I haven't heard it since.

Anyway, she's in a good place. They're figuring out what's wrong with her and are treating her accordingly. Hopefully she'll be on the road to recovery. But understand the frustration and the worry. Wanting to be home, worrying if this is how it's going to be... <img src="i/expressions/face-icon-small-sad.gif" border="0">

Ratatosk · Nov 2, 2007

I just looked at your caringbridge site -- When Max was 2 months old he developed such a horrible cough that I'd have to hold him over sinks, floor drains, etc. because he'd cough so hard he'd hurl. He actually spent his first 4 weeks of life at children's recovering from surgery to repair an obstruction due to meconium illeus. He went home from the hospital with the start of a cough, ended up in the local hospital for two weeks. Still had the cough which progressed to the vomiting stage. Couldn't take him anywhere! He'd cough and hurl. Took him to the local cf doctor for a two month check up and asked about the cough. The doctor told me the cough was normal -- "that's what cfers do". A few weeks later, we went back to Minneapolis for a recheck -- his CF doctor YELLED at us. HE had bronchitis -- didn't we know he could've ended up back in the hospital. Put him on Tobi, septra, bds 4 times a day.... Anyway, sorry this is so long. But he cultured the enterbactor cholae (sp). Got pseudo a month later.

But the only time he had that nasty cough was when he cultured the enterbactor -- figure he must've gotten it in the hospital. To this day I haven't heard it since.

Anyway, she's in a good place. They're figuring out what's wrong with her and are treating her accordingly. Hopefully she'll be on the road to recovery. But understand the frustration and the worry. Wanting to be home, worrying if this is how it's going to be... <img src="i/expressions/face-icon-small-sad.gif" border="0">

Ratatosk · Nov 2, 2007

I just looked at your caringbridge site -- When Max was 2 months old he developed such a horrible cough that I'd have to hold him over sinks, floor drains, etc. because he'd cough so hard he'd hurl. He actually spent his first 4 weeks of life at children's recovering from surgery to repair an obstruction due to meconium illeus. He went home from the hospital with the start of a cough, ended up in the local hospital for two weeks. Still had the cough which progressed to the vomiting stage. Couldn't take him anywhere! He'd cough and hurl. Took him to the local cf doctor for a two month check up and asked about the cough. The doctor told me the cough was normal -- "that's what cfers do". A few weeks later, we went back to Minneapolis for a recheck -- his CF doctor YELLED at us. HE had bronchitis -- didn't we know he could've ended up back in the hospital. Put him on Tobi, septra, bds 4 times a day.... Anyway, sorry this is so long. But he cultured the enterbactor cholae (sp). Got pseudo a month later.

But the only time he had that nasty cough was when he cultured the enterbactor -- figure he must've gotten it in the hospital. To this day I haven't heard it since.

Anyway, she's in a good place. They're figuring out what's wrong with her and are treating her accordingly. Hopefully she'll be on the road to recovery. But understand the frustration and the worry. Wanting to be home, worrying if this is how it's going to be... <img src="i/expressions/face-icon-small-sad.gif" border="0">

Ratatosk · Nov 2, 2007

I just looked at your caringbridge site -- When Max was 2 months old he developed such a horrible cough that I'd have to hold him over sinks, floor drains, etc. because he'd cough so hard he'd hurl. He actually spent his first 4 weeks of life at children's recovering from surgery to repair an obstruction due to meconium illeus. He went home from the hospital with the start of a cough, ended up in the local hospital for two weeks. Still had the cough which progressed to the vomiting stage. Couldn't take him anywhere! He'd cough and hurl. Took him to the local cf doctor for a two month check up and asked about the cough. The doctor told me the cough was normal -- "that's what cfers do". A few weeks later, we went back to Minneapolis for a recheck -- his CF doctor YELLED at us. HE had bronchitis -- didn't we know he could've ended up back in the hospital. Put him on Tobi, septra, bds 4 times a day.... Anyway, sorry this is so long. But he cultured the enterbactor cholae (sp). Got pseudo a month later.

But the only time he had that nasty cough was when he cultured the enterbactor -- figure he must've gotten it in the hospital. To this day I haven't heard it since.

Anyway, she's in a good place. They're figuring out what's wrong with her and are treating her accordingly. Hopefully she'll be on the road to recovery. But understand the frustration and the worry. Wanting to be home, worrying if this is how it's going to be... <img src="i/expressions/face-icon-small-sad.gif" border="0">

Ratatosk · Nov 2, 2007

I just looked at your caringbridge site -- When Max was 2 months old he developed such a horrible cough that I'd have to hold him over sinks, floor drains, etc. because he'd cough so hard he'd hurl. He actually spent his first 4 weeks of life at children's recovering from surgery to repair an obstruction due to meconium illeus. He went home from the hospital with the start of a cough, ended up in the local hospital for two weeks. Still had the cough which progressed to the vomiting stage. Couldn't take him anywhere! He'd cough and hurl. Took him to the local cf doctor for a two month check up and asked about the cough. The doctor told me the cough was normal -- "that's what cfers do". A few weeks later, we went back to Minneapolis for a recheck -- his CF doctor YELLED at us. HE had bronchitis -- didn't we know he could've ended up back in the hospital. Put him on Tobi, septra, bds 4 times a day.... Anyway, sorry this is so long. But he cultured the enterbactor cholae (sp). Got pseudo a month later.

But the only time he had that nasty cough was when he cultured the enterbactor -- figure he must've gotten it in the hospital. To this day I haven't heard it since.

Anyway, she's in a good place. They're figuring out what's wrong with her and are treating her accordingly. Hopefully she'll be on the road to recovery. But understand the frustration and the worry. Wanting to be home, worrying if this is how it's going to be... <img src="i/expressions/face-icon-small-sad.gif" border="0">

JORDYSMOM · Nov 2, 2007