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being admitted to CHLA for 2 weeks

fuel1316

New member
we had our CHLA apt today. they said her weight gain is fantastic. she has gain 2lbs since her last visit, so in one month she has gained 20% of her body weight. they said the feeding regimen i put her on is doing well.

last time we were there she had a lung x-ray and they saw a spot on it but her oxygen (O2 sats) were at 100% and her lungs sounded perfectly clear so she thought it might just be a shadow or something. we re did her x-ray today and she said the spot is now huge and she needs to be hospitalized. she has bronchitus. they are not sure if its just from cf or its from aspirating. they dont believe it to be viral. they dont have any beds available today so she said we should get a call tomorrow with a free bed and to admit her then. she will go on IV antibiotics and friday shell get a bronchoscopy so they can figure out what is in there and once they culture it they can figure out what antibiotics will work best to kill it. shell be on broad spec antibiotics until then. she will be starting zantac (im not sure of the dose yet) in case shes aspirating on stomach acid.. the dr said she will be there for NO LESS than 2 weeks. she said well probably never have our own room since its so busy so i guess we just have to hope for some good room mates

weve just been floating by thinking "ok shes fine" but now were here. we have to deal with this awful disease.. she hasnt even been coughing more than normal! the dr said she doesnt know why she hasnt been... if we hadnt done an xray we would have never known she was sick.

*sigh*
 

fuel1316

New member
we had our CHLA apt today. they said her weight gain is fantastic. she has gain 2lbs since her last visit, so in one month she has gained 20% of her body weight. they said the feeding regimen i put her on is doing well.

last time we were there she had a lung x-ray and they saw a spot on it but her oxygen (O2 sats) were at 100% and her lungs sounded perfectly clear so she thought it might just be a shadow or something. we re did her x-ray today and she said the spot is now huge and she needs to be hospitalized. she has bronchitus. they are not sure if its just from cf or its from aspirating. they dont believe it to be viral. they dont have any beds available today so she said we should get a call tomorrow with a free bed and to admit her then. she will go on IV antibiotics and friday shell get a bronchoscopy so they can figure out what is in there and once they culture it they can figure out what antibiotics will work best to kill it. shell be on broad spec antibiotics until then. she will be starting zantac (im not sure of the dose yet) in case shes aspirating on stomach acid.. the dr said she will be there for NO LESS than 2 weeks. she said well probably never have our own room since its so busy so i guess we just have to hope for some good room mates

weve just been floating by thinking "ok shes fine" but now were here. we have to deal with this awful disease.. she hasnt even been coughing more than normal! the dr said she doesnt know why she hasnt been... if we hadnt done an xray we would have never known she was sick.

*sigh*
 

fuel1316

New member
we had our CHLA apt today. they said her weight gain is fantastic. she has gain 2lbs since her last visit, so in one month she has gained 20% of her body weight. they said the feeding regimen i put her on is doing well.

last time we were there she had a lung x-ray and they saw a spot on it but her oxygen (O2 sats) were at 100% and her lungs sounded perfectly clear so she thought it might just be a shadow or something. we re did her x-ray today and she said the spot is now huge and she needs to be hospitalized. she has bronchitus. they are not sure if its just from cf or its from aspirating. they dont believe it to be viral. they dont have any beds available today so she said we should get a call tomorrow with a free bed and to admit her then. she will go on IV antibiotics and friday shell get a bronchoscopy so they can figure out what is in there and once they culture it they can figure out what antibiotics will work best to kill it. shell be on broad spec antibiotics until then. she will be starting zantac (im not sure of the dose yet) in case shes aspirating on stomach acid.. the dr said she will be there for NO LESS than 2 weeks. she said well probably never have our own room since its so busy so i guess we just have to hope for some good room mates

weve just been floating by thinking "ok shes fine" but now were here. we have to deal with this awful disease.. she hasnt even been coughing more than normal! the dr said she doesnt know why she hasnt been... if we hadnt done an xray we would have never known she was sick.

*sigh*
 

fuel1316

New member
we had our CHLA apt today. they said her weight gain is fantastic. she has gain 2lbs since her last visit, so in one month she has gained 20% of her body weight. they said the feeding regimen i put her on is doing well.

last time we were there she had a lung x-ray and they saw a spot on it but her oxygen (O2 sats) were at 100% and her lungs sounded perfectly clear so she thought it might just be a shadow or something. we re did her x-ray today and she said the spot is now huge and she needs to be hospitalized. she has bronchitus. they are not sure if its just from cf or its from aspirating. they dont believe it to be viral. they dont have any beds available today so she said we should get a call tomorrow with a free bed and to admit her then. she will go on IV antibiotics and friday shell get a bronchoscopy so they can figure out what is in there and once they culture it they can figure out what antibiotics will work best to kill it. shell be on broad spec antibiotics until then. she will be starting zantac (im not sure of the dose yet) in case shes aspirating on stomach acid.. the dr said she will be there for NO LESS than 2 weeks. she said well probably never have our own room since its so busy so i guess we just have to hope for some good room mates

weve just been floating by thinking "ok shes fine" but now were here. we have to deal with this awful disease.. she hasnt even been coughing more than normal! the dr said she doesnt know why she hasnt been... if we hadnt done an xray we would have never known she was sick.

*sigh*
 

fuel1316

New member
we had our CHLA apt today. they said her weight gain is fantastic. she has gain 2lbs since her last visit, so in one month she has gained 20% of her body weight. they said the feeding regimen i put her on is doing well.
<br />
<br />last time we were there she had a lung x-ray and they saw a spot on it but her oxygen (O2 sats) were at 100% and her lungs sounded perfectly clear so she thought it might just be a shadow or something. we re did her x-ray today and she said the spot is now huge and she needs to be hospitalized. she has bronchitus. they are not sure if its just from cf or its from aspirating. they dont believe it to be viral. they dont have any beds available today so she said we should get a call tomorrow with a free bed and to admit her then. she will go on IV antibiotics and friday shell get a bronchoscopy so they can figure out what is in there and once they culture it they can figure out what antibiotics will work best to kill it. shell be on broad spec antibiotics until then. she will be starting zantac (im not sure of the dose yet) in case shes aspirating on stomach acid.. the dr said she will be there for NO LESS than 2 weeks. she said well probably never have our own room since its so busy so i guess we just have to hope for some good room mates
<br />
<br />weve just been floating by thinking "ok shes fine" but now were here. we have to deal with this awful disease.. she hasnt even been coughing more than normal! the dr said she doesnt know why she hasnt been... if we hadnt done an xray we would have never known she was sick.
<br />
<br />*sigh*
<br />
 
M

Mommafirst

Guest
I'm so sorry to hear you are going in-patient. We are in now, but the first one is overwhelming and drives home the realities of this disease. I know you can't even fathom it, but it does get easier. You get used to it. The hospital doesn't seem so strange and scary. It sucks, but you adapt.

CF is so mysterious to me....how they can be soooo sick and yet not seem it. They need IVs and yet seem happy and energetic.

Good luck on the stay. Hang in there. Be good to yourself. HOpefully whatever is in her lungs can be erradicated. Many other parents have said the first year was awful, but that it definitely got better over time. We have had about one in-patient stay per year, so its evened out, but it isn't great.

((((HUGS))))
 
M

Mommafirst

Guest
I'm so sorry to hear you are going in-patient. We are in now, but the first one is overwhelming and drives home the realities of this disease. I know you can't even fathom it, but it does get easier. You get used to it. The hospital doesn't seem so strange and scary. It sucks, but you adapt.

CF is so mysterious to me....how they can be soooo sick and yet not seem it. They need IVs and yet seem happy and energetic.

Good luck on the stay. Hang in there. Be good to yourself. HOpefully whatever is in her lungs can be erradicated. Many other parents have said the first year was awful, but that it definitely got better over time. We have had about one in-patient stay per year, so its evened out, but it isn't great.

((((HUGS))))
 
M

Mommafirst

Guest
I'm so sorry to hear you are going in-patient. We are in now, but the first one is overwhelming and drives home the realities of this disease. I know you can't even fathom it, but it does get easier. You get used to it. The hospital doesn't seem so strange and scary. It sucks, but you adapt.

CF is so mysterious to me....how they can be soooo sick and yet not seem it. They need IVs and yet seem happy and energetic.

Good luck on the stay. Hang in there. Be good to yourself. HOpefully whatever is in her lungs can be erradicated. Many other parents have said the first year was awful, but that it definitely got better over time. We have had about one in-patient stay per year, so its evened out, but it isn't great.

((((HUGS))))
 
M

Mommafirst

Guest
I'm so sorry to hear you are going in-patient. We are in now, but the first one is overwhelming and drives home the realities of this disease. I know you can't even fathom it, but it does get easier. You get used to it. The hospital doesn't seem so strange and scary. It sucks, but you adapt.

CF is so mysterious to me....how they can be soooo sick and yet not seem it. They need IVs and yet seem happy and energetic.

Good luck on the stay. Hang in there. Be good to yourself. HOpefully whatever is in her lungs can be erradicated. Many other parents have said the first year was awful, but that it definitely got better over time. We have had about one in-patient stay per year, so its evened out, but it isn't great.

((((HUGS))))
 
M

Mommafirst

Guest
I'm so sorry to hear you are going in-patient. We are in now, but the first one is overwhelming and drives home the realities of this disease. I know you can't even fathom it, but it does get easier. You get used to it. The hospital doesn't seem so strange and scary. It sucks, but you adapt.
<br />
<br />CF is so mysterious to me....how they can be soooo sick and yet not seem it. They need IVs and yet seem happy and energetic.
<br />
<br />Good luck on the stay. Hang in there. Be good to yourself. HOpefully whatever is in her lungs can be erradicated. Many other parents have said the first year was awful, but that it definitely got better over time. We have had about one in-patient stay per year, so its evened out, but it isn't great.
<br />
<br />((((HUGS))))
 

fuel1316

New member
thank you for the reply. she was in the NICU for the first month of life so we know how it goes but this is her first hospitalization.

im starting to think her bronch is from aspirating on stomach acid. can you fix that?

im heart broken because of yesterday dh said he wont have any more kids unless he can guarantee they will not have cf. so that means IVF and i know it will never happen because we dont have $16,000 laying around now esspecialy with a sick daughter that needs so much medical care.
 

fuel1316

New member
thank you for the reply. she was in the NICU for the first month of life so we know how it goes but this is her first hospitalization.

im starting to think her bronch is from aspirating on stomach acid. can you fix that?

im heart broken because of yesterday dh said he wont have any more kids unless he can guarantee they will not have cf. so that means IVF and i know it will never happen because we dont have $16,000 laying around now esspecialy with a sick daughter that needs so much medical care.
 

fuel1316

New member
thank you for the reply. she was in the NICU for the first month of life so we know how it goes but this is her first hospitalization.

im starting to think her bronch is from aspirating on stomach acid. can you fix that?

im heart broken because of yesterday dh said he wont have any more kids unless he can guarantee they will not have cf. so that means IVF and i know it will never happen because we dont have $16,000 laying around now esspecialy with a sick daughter that needs so much medical care.
 

fuel1316

New member
thank you for the reply. she was in the NICU for the first month of life so we know how it goes but this is her first hospitalization.

im starting to think her bronch is from aspirating on stomach acid. can you fix that?

im heart broken because of yesterday dh said he wont have any more kids unless he can guarantee they will not have cf. so that means IVF and i know it will never happen because we dont have $16,000 laying around now esspecialy with a sick daughter that needs so much medical care.
 

fuel1316

New member
thank you for the reply. she was in the NICU for the first month of life so we know how it goes but this is her first hospitalization.
<br />
<br />im starting to think her bronch is from aspirating on stomach acid. can you fix that?
<br />
<br />im heart broken because of yesterday dh said he wont have any more kids unless he can guarantee they will not have cf. so that means IVF and i know it will never happen because we dont have $16,000 laying around now esspecialy with a sick daughter that needs so much medical care.
 
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