childrens hospital visit......

[fuel1316]

we had our childrens hospital apt today... its not great... <img src="i/expressions/face-icon-small-mad.gif" border="0">

well gwen is 8lbs 9oz. she is in the 50% for her height (still) and is NOW in the 5% for her weight. she was between 5-10% last month and is now for sure at 5%.

they upped her creon meds from 1 pill before each feed, to 1 1/2 pills and i can up it to 2 pills in a week if i dont see any improvement.

because shes been having a dry cough on and off now we have to do 3 lung treatments a day instead of 2. we got the Rx for her lung meds now so we can start that right away (finally) and they are upping her calories...

now when we make her formula: instead of 3 powder scoops= 6oz. we use 3 powder scoops and make 5oz. so instead of 20 calories per oz. shell be getting 24.

they did a fecal elastees (sp?) test and a normal person should have 500 for their pancreatic enzymes. gwen has 15! they said shes the most pancreatic insufficient they have seen.

 

[fuel1316]

we had our childrens hospital apt today... its not great... <img src="i/expressions/face-icon-small-mad.gif" border="0">

well gwen is 8lbs 9oz. she is in the 50% for her height (still) and is NOW in the 5% for her weight. she was between 5-10% last month and is now for sure at 5%.

they upped her creon meds from 1 pill before each feed, to 1 1/2 pills and i can up it to 2 pills in a week if i dont see any improvement.

because shes been having a dry cough on and off now we have to do 3 lung treatments a day instead of 2. we got the Rx for her lung meds now so we can start that right away (finally) and they are upping her calories...

now when we make her formula: instead of 3 powder scoops= 6oz. we use 3 powder scoops and make 5oz. so instead of 20 calories per oz. shell be getting 24.

they did a fecal elastees (sp?) test and a normal person should have 500 for their pancreatic enzymes. gwen has 15! they said shes the most pancreatic insufficient they have seen.

 

[fuel1316]

we had our childrens hospital apt today... its not great... <img src="i/expressions/face-icon-small-mad.gif" border="0">

well gwen is 8lbs 9oz. she is in the 50% for her height (still) and is NOW in the 5% for her weight. she was between 5-10% last month and is now for sure at 5%.

they upped her creon meds from 1 pill before each feed, to 1 1/2 pills and i can up it to 2 pills in a week if i dont see any improvement.

because shes been having a dry cough on and off now we have to do 3 lung treatments a day instead of 2. we got the Rx for her lung meds now so we can start that right away (finally) and they are upping her calories...

now when we make her formula: instead of 3 powder scoops= 6oz. we use 3 powder scoops and make 5oz. so instead of 20 calories per oz. shell be getting 24.

they did a fecal elastees (sp?) test and a normal person should have 500 for their pancreatic enzymes. gwen has 15! they said shes the most pancreatic insufficient they have seen.

 

[fuel1316]

we had our childrens hospital apt today... its not great... <img src="i/expressions/face-icon-small-mad.gif" border="0">

well gwen is 8lbs 9oz. she is in the 50% for her height (still) and is NOW in the 5% for her weight. she was between 5-10% last month and is now for sure at 5%.

they upped her creon meds from 1 pill before each feed, to 1 1/2 pills and i can up it to 2 pills in a week if i dont see any improvement.

because shes been having a dry cough on and off now we have to do 3 lung treatments a day instead of 2. we got the Rx for her lung meds now so we can start that right away (finally) and they are upping her calories...

now when we make her formula: instead of 3 powder scoops= 6oz. we use 3 powder scoops and make 5oz. so instead of 20 calories per oz. shell be getting 24.

they did a fecal elastees (sp?) test and a normal person should have 500 for their pancreatic enzymes. gwen has 15! they said shes the most pancreatic insufficient they have seen.

 

[fuel1316]

we had our childrens hospital apt today... its not great... <img src="i/expressions/face-icon-small-mad.gif" border="0">
<br />
<br />well gwen is 8lbs 9oz. she is in the 50% for her height (still) and is NOW in the 5% for her weight. she was between 5-10% last month and is now for sure at 5%.
<br />
<br />they upped her creon meds from 1 pill before each feed, to 1 1/2 pills and i can up it to 2 pills in a week if i dont see any improvement.
<br />
<br />because shes been having a dry cough on and off now we have to do 3 lung treatments a day instead of 2. we got the Rx for her lung meds now so we can start that right away (finally) and they are upping her calories...
<br />
<br />now when we make her formula: instead of 3 powder scoops= 6oz. we use 3 powder scoops and make 5oz. so instead of 20 calories per oz. shell be getting 24.
<br />
<br />they did a fecal elastees (sp?) test and a normal person should have 500 for their pancreatic enzymes. gwen has 15! they said shes the most pancreatic insufficient they have seen.
<br />

 

[Mommafirst]

(((hugs))) I'm so sorry it was a tough visit.

 

[Mommafirst]

(((hugs))) I'm so sorry it was a tough visit.

 

[Mommafirst]

(((hugs))) I'm so sorry it was a tough visit.

 

[Mommafirst]

(((hugs))) I'm so sorry it was a tough visit.

 

[Mommafirst]

(((hugs))) I'm so sorry it was a tough visit.

 

[crickit715]

so sorry to hear this....but keep your chin up....it seems like the first 6-9 months are really rough because there is alot of "tweeking" and "trying" to see what works and what doesnt because each child is so different! i can remember last year going thru the same thing!! hang in there and God Bless you and your little angel!

 

[crickit715]

so sorry to hear this....but keep your chin up....it seems like the first 6-9 months are really rough because there is alot of "tweeking" and "trying" to see what works and what doesnt because each child is so different! i can remember last year going thru the same thing!! hang in there and God Bless you and your little angel!

 

[crickit715]

so sorry to hear this....but keep your chin up....it seems like the first 6-9 months are really rough because there is alot of "tweeking" and "trying" to see what works and what doesnt because each child is so different! i can remember last year going thru the same thing!! hang in there and God Bless you and your little angel!

 

[crickit715]

so sorry to hear this....but keep your chin up....it seems like the first 6-9 months are really rough because there is alot of "tweeking" and "trying" to see what works and what doesnt because each child is so different! i can remember last year going thru the same thing!! hang in there and God Bless you and your little angel!

 

[crickit715]

so sorry to hear this....but keep your chin up....it seems like the first 6-9 months are really rough because there is alot of "tweeking" and "trying" to see what works and what doesnt because each child is so different! i can remember last year going thru the same thing!! hang in there and God Bless you and your little angel!

 

[kitomd21]

I believe Ellie's elastase value was just as low! It's a very frustrating process in finding out what the "right" mix of things will be to get our little ones to gain weight. I thought it would be easier when she moved to solids...but she has yet to do that!! I'm sorry for your frustration - you're not alone!

 

[kitomd21]

I believe Ellie's elastase value was just as low! It's a very frustrating process in finding out what the "right" mix of things will be to get our little ones to gain weight. I thought it would be easier when she moved to solids...but she has yet to do that!! I'm sorry for your frustration - you're not alone!

 

[kitomd21]

I believe Ellie's elastase value was just as low! It's a very frustrating process in finding out what the "right" mix of things will be to get our little ones to gain weight. I thought it would be easier when she moved to solids...but she has yet to do that!! I'm sorry for your frustration - you're not alone!

 

[kitomd21]

I believe Ellie's elastase value was just as low! It's a very frustrating process in finding out what the "right" mix of things will be to get our little ones to gain weight. I thought it would be easier when she moved to solids...but she has yet to do that!! I'm sorry for your frustration - you're not alone!

 

[kitomd21]

I believe Ellie's elastase value was just as low! It's a very frustrating process in finding out what the "right" mix of things will be to get our little ones to gain weight. I thought it would be easier when she moved to solids...but she has yet to do that!! I'm sorry for your frustration - you're not alone!