Ellie update questions, and cultures

S

shimmereestar

New member
Yay, a great visit...almost 5 weeks and we haven't had to go back to the hospital this is a record for us. <img src="i/expressions/face-icon-small-smile.gif" border="0"> We do have had to go weekly to appts. since she still has her broviac line in from her antibiotics for dressing changes and follow ups, but no more overnights. She is a whopping 13lbs 14oz. and she sounds completely clear. The doctors were very happy to see her doing so well.

I was wondering how often your little ones have to give cultures (you know the whole nose suctioning for mucus samples) Ellie (she's five months) has been going weekly to dr. appts. since she's had to fight infections pretty much all winter and they want to keep a close eye on her. They have gotten cultures from her roughly every other to every three weeks since March (her last bought of bronchitis and pneumonia). Does that seem like a lot? When your kiddos get older do they just blow their nose or how do they get samples? I'm just curious. Ellie takes it pretty well since we suction her everyday but the deep cultures usually get to her(where they go down further with the long tube). I know they are just making sure she's not growing pseudamonas, but of course this just makes me worry even more that she will get them and it's just a matter of time.

One more thing, her vitamin K levels were high, what does that mean? I forgot to ask but am going to call back.

Tomorrow is our Great Strides walk, I'm pretty excited but I know that 5k is going to be tough, I haven't truly exercised since before I was pregnant.

I hope all of ya'll have a great weekend.
 
S

shimmereestar

New member
Yay, a great visit...almost 5 weeks and we haven't had to go back to the hospital this is a record for us. <img src="i/expressions/face-icon-small-smile.gif" border="0"> We do have had to go weekly to appts. since she still has her broviac line in from her antibiotics for dressing changes and follow ups, but no more overnights. She is a whopping 13lbs 14oz. and she sounds completely clear. The doctors were very happy to see her doing so well.

I was wondering how often your little ones have to give cultures (you know the whole nose suctioning for mucus samples) Ellie (she's five months) has been going weekly to dr. appts. since she's had to fight infections pretty much all winter and they want to keep a close eye on her. They have gotten cultures from her roughly every other to every three weeks since March (her last bought of bronchitis and pneumonia). Does that seem like a lot? When your kiddos get older do they just blow their nose or how do they get samples? I'm just curious. Ellie takes it pretty well since we suction her everyday but the deep cultures usually get to her(where they go down further with the long tube). I know they are just making sure she's not growing pseudamonas, but of course this just makes me worry even more that she will get them and it's just a matter of time.

One more thing, her vitamin K levels were high, what does that mean? I forgot to ask but am going to call back.

Tomorrow is our Great Strides walk, I'm pretty excited but I know that 5k is going to be tough, I haven't truly exercised since before I was pregnant.

I hope all of ya'll have a great weekend.
 
S

shimmereestar

New member
Yay, a great visit...almost 5 weeks and we haven't had to go back to the hospital this is a record for us. <img src="i/expressions/face-icon-small-smile.gif" border="0"> We do have had to go weekly to appts. since she still has her broviac line in from her antibiotics for dressing changes and follow ups, but no more overnights. She is a whopping 13lbs 14oz. and she sounds completely clear. The doctors were very happy to see her doing so well.

I was wondering how often your little ones have to give cultures (you know the whole nose suctioning for mucus samples) Ellie (she's five months) has been going weekly to dr. appts. since she's had to fight infections pretty much all winter and they want to keep a close eye on her. They have gotten cultures from her roughly every other to every three weeks since March (her last bought of bronchitis and pneumonia). Does that seem like a lot? When your kiddos get older do they just blow their nose or how do they get samples? I'm just curious. Ellie takes it pretty well since we suction her everyday but the deep cultures usually get to her(where they go down further with the long tube). I know they are just making sure she's not growing pseudamonas, but of course this just makes me worry even more that she will get them and it's just a matter of time.

One more thing, her vitamin K levels were high, what does that mean? I forgot to ask but am going to call back.

Tomorrow is our Great Strides walk, I'm pretty excited but I know that 5k is going to be tough, I haven't truly exercised since before I was pregnant.

I hope all of ya'll have a great weekend.
 
S

shimmereestar

New member
Yay, a great visit...almost 5 weeks and we haven't had to go back to the hospital this is a record for us. <img src="i/expressions/face-icon-small-smile.gif" border="0"> We do have had to go weekly to appts. since she still has her broviac line in from her antibiotics for dressing changes and follow ups, but no more overnights. She is a whopping 13lbs 14oz. and she sounds completely clear. The doctors were very happy to see her doing so well.

I was wondering how often your little ones have to give cultures (you know the whole nose suctioning for mucus samples) Ellie (she's five months) has been going weekly to dr. appts. since she's had to fight infections pretty much all winter and they want to keep a close eye on her. They have gotten cultures from her roughly every other to every three weeks since March (her last bought of bronchitis and pneumonia). Does that seem like a lot? When your kiddos get older do they just blow their nose or how do they get samples? I'm just curious. Ellie takes it pretty well since we suction her everyday but the deep cultures usually get to her(where they go down further with the long tube). I know they are just making sure she's not growing pseudamonas, but of course this just makes me worry even more that she will get them and it's just a matter of time.

One more thing, her vitamin K levels were high, what does that mean? I forgot to ask but am going to call back.

Tomorrow is our Great Strides walk, I'm pretty excited but I know that 5k is going to be tough, I haven't truly exercised since before I was pregnant.

I hope all of ya'll have a great weekend.
 
S

shimmereestar

New member
Yay, a great visit...almost 5 weeks and we haven't had to go back to the hospital this is a record for us. <img src="i/expressions/face-icon-small-smile.gif" border="0"> We do have had to go weekly to appts. since she still has her broviac line in from her antibiotics for dressing changes and follow ups, but no more overnights. She is a whopping 13lbs 14oz. and she sounds completely clear. The doctors were very happy to see her doing so well.
<br />
<br />I was wondering how often your little ones have to give cultures (you know the whole nose suctioning for mucus samples) Ellie (she's five months) has been going weekly to dr. appts. since she's had to fight infections pretty much all winter and they want to keep a close eye on her. They have gotten cultures from her roughly every other to every three weeks since March (her last bought of bronchitis and pneumonia). Does that seem like a lot? When your kiddos get older do they just blow their nose or how do they get samples? I'm just curious. Ellie takes it pretty well since we suction her everyday but the deep cultures usually get to her(where they go down further with the long tube). I know they are just making sure she's not growing pseudamonas, but of course this just makes me worry even more that she will get them and it's just a matter of time.
<br />
<br />One more thing, her vitamin K levels were high, what does that mean? I forgot to ask but am going to call back.
<br />
<br />Tomorrow is our Great Strides walk, I'm pretty excited but I know that 5k is going to be tough, I haven't truly exercised since before I was pregnant.
<br />
<br />I hope all of ya'll have a great weekend.
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Z

zeeannie

Guest
Eventually they might start doing throat swabs to get a culture, then when she's able to cough up sputum, they'll use that. In extreme cases they'll do a bronchoscopy, but that's under all sorts of other circumstances and a last resort. It's definitely not a regular thing. The sputum culture is the norm at our clinic. That's done every visit, or at least it is for us and we go quarterly. I don't know about the one's who go more often.

I haven't heard anything about high Vitamin K levels. Sophie is taking a supplement. It's a fat soluble vitamin, so usually it would be low in a CF'er as far as I know. She's also taking ADEK vitamins. They have a liquid form for the little one's. I'd be interested to hear what the high K would mean after you find out.

Good luck with the walk and congratulations on your progress!
 
Z

zeeannie

Guest
Eventually they might start doing throat swabs to get a culture, then when she's able to cough up sputum, they'll use that. In extreme cases they'll do a bronchoscopy, but that's under all sorts of other circumstances and a last resort. It's definitely not a regular thing. The sputum culture is the norm at our clinic. That's done every visit, or at least it is for us and we go quarterly. I don't know about the one's who go more often.

I haven't heard anything about high Vitamin K levels. Sophie is taking a supplement. It's a fat soluble vitamin, so usually it would be low in a CF'er as far as I know. She's also taking ADEK vitamins. They have a liquid form for the little one's. I'd be interested to hear what the high K would mean after you find out.

Good luck with the walk and congratulations on your progress!
 
Z

zeeannie

Guest
Eventually they might start doing throat swabs to get a culture, then when she's able to cough up sputum, they'll use that. In extreme cases they'll do a bronchoscopy, but that's under all sorts of other circumstances and a last resort. It's definitely not a regular thing. The sputum culture is the norm at our clinic. That's done every visit, or at least it is for us and we go quarterly. I don't know about the one's who go more often.

I haven't heard anything about high Vitamin K levels. Sophie is taking a supplement. It's a fat soluble vitamin, so usually it would be low in a CF'er as far as I know. She's also taking ADEK vitamins. They have a liquid form for the little one's. I'd be interested to hear what the high K would mean after you find out.

Good luck with the walk and congratulations on your progress!
 
Z

zeeannie

Guest
Eventually they might start doing throat swabs to get a culture, then when she's able to cough up sputum, they'll use that. In extreme cases they'll do a bronchoscopy, but that's under all sorts of other circumstances and a last resort. It's definitely not a regular thing. The sputum culture is the norm at our clinic. That's done every visit, or at least it is for us and we go quarterly. I don't know about the one's who go more often.

I haven't heard anything about high Vitamin K levels. Sophie is taking a supplement. It's a fat soluble vitamin, so usually it would be low in a CF'er as far as I know. She's also taking ADEK vitamins. They have a liquid form for the little one's. I'd be interested to hear what the high K would mean after you find out.

Good luck with the walk and congratulations on your progress!
 
Z

zeeannie

Guest
Eventually they might start doing throat swabs to get a culture, then when she's able to cough up sputum, they'll use that. In extreme cases they'll do a bronchoscopy, but that's under all sorts of other circumstances and a last resort. It's definitely not a regular thing. The sputum culture is the norm at our clinic. That's done every visit, or at least it is for us and we go quarterly. I don't know about the one's who go more often.
<br />
<br />I haven't heard anything about high Vitamin K levels. Sophie is taking a supplement. It's a fat soluble vitamin, so usually it would be low in a CF'er as far as I know. She's also taking ADEK vitamins. They have a liquid form for the little one's. I'd be interested to hear what the high K would mean after you find out.
<br />
<br />Good luck with the walk and congratulations on your progress!
<br />
<br />
 
M

Mommafirst

Guest
I'm so glad she's doing better. Alyssa only gets the nose suction culture for her yearly CF appt. Otherwise she gets a throat culture. Kinda like a strep throat swab, but they get deep down and try to get her to cough. When she is old enough they will have her cough up sputum for a sample. Throat culturs can miss things, but she had a bronch in October and the same staph she cultures in the throat culture grew out from the lavage. Nothing else.
 
M

Mommafirst

Guest
I'm so glad she's doing better. Alyssa only gets the nose suction culture for her yearly CF appt. Otherwise she gets a throat culture. Kinda like a strep throat swab, but they get deep down and try to get her to cough. When she is old enough they will have her cough up sputum for a sample. Throat culturs can miss things, but she had a bronch in October and the same staph she cultures in the throat culture grew out from the lavage. Nothing else.
 
M

Mommafirst

Guest
I'm so glad she's doing better. Alyssa only gets the nose suction culture for her yearly CF appt. Otherwise she gets a throat culture. Kinda like a strep throat swab, but they get deep down and try to get her to cough. When she is old enough they will have her cough up sputum for a sample. Throat culturs can miss things, but she had a bronch in October and the same staph she cultures in the throat culture grew out from the lavage. Nothing else.
 
M

Mommafirst

Guest
I'm so glad she's doing better. Alyssa only gets the nose suction culture for her yearly CF appt. Otherwise she gets a throat culture. Kinda like a strep throat swab, but they get deep down and try to get her to cough. When she is old enough they will have her cough up sputum for a sample. Throat culturs can miss things, but she had a bronch in October and the same staph she cultures in the throat culture grew out from the lavage. Nothing else.
 
M

Mommafirst

Guest
I'm so glad she's doing better. Alyssa only gets the nose suction culture for her yearly CF appt. Otherwise she gets a throat culture. Kinda like a strep throat swab, but they get deep down and try to get her to cough. When she is old enough they will have her cough up sputum for a sample. Throat culturs can miss things, but she had a bronch in October and the same staph she cultures in the throat culture grew out from the lavage. Nothing else.
 
D

debs2girls

New member
Wow, her weight sounds great...I think Chey was 9 or 10 months before she hit that mark.
Cheyenne goes to the dr's on a monthly basis unless she is just coming out of the hospital then it is weekly until off of i.v's.
She is 7 and still gets suctioned once a month. They said that is how they get the specimen until they are able to "cough it out".
 
D

debs2girls

New member
Wow, her weight sounds great...I think Chey was 9 or 10 months before she hit that mark.
Cheyenne goes to the dr's on a monthly basis unless she is just coming out of the hospital then it is weekly until off of i.v's.
She is 7 and still gets suctioned once a month. They said that is how they get the specimen until they are able to "cough it out".
 
D

debs2girls

New member
Wow, her weight sounds great...I think Chey was 9 or 10 months before she hit that mark.
Cheyenne goes to the dr's on a monthly basis unless she is just coming out of the hospital then it is weekly until off of i.v's.
She is 7 and still gets suctioned once a month. They said that is how they get the specimen until they are able to "cough it out".
 
D

debs2girls

New member
Wow, her weight sounds great...I think Chey was 9 or 10 months before she hit that mark.
Cheyenne goes to the dr's on a monthly basis unless she is just coming out of the hospital then it is weekly until off of i.v's.
She is 7 and still gets suctioned once a month. They said that is how they get the specimen until they are able to "cough it out".
 
D

debs2girls

New member
Wow, her weight sounds great...I think Chey was 9 or 10 months before she hit that mark.
<br />Cheyenne goes to the dr's on a monthly basis unless she is just coming out of the hospital then it is weekly until off of i.v's.
<br />She is 7 and still gets suctioned once a month. They said that is how they get the specimen until they are able to "cough it out".
<br />
 
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