Need help with some questions

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ReneeP

New member
As I posted earlier in the week, my 12 year old daughter, Kaitlyn, is in the hospital. She had been completely healthy since the week she turned 3... literally, she has not been sick since then. Until last week... Now it seems that all hell has broken lose on her and it's about to do me in... (and her too, I am sure).

Her FEF 25-75 (which I understand from the dr is small airways) is normally 115 (pre illness)... when we came into the hospital on the 19th it was 29... on the 22nd it was 23. We repeated PFTs today and it still (after 9 days on IV antibiotics) is only 40. The dr is extremely concerned it isn't improving more than that. I am scared she will not recover from this. How long does it take for your numbers to go back up once you've been on IV's for a while? What's normal?

Also, in the midst of all this, today they diagnosed her with CFRD. When they checked her blood sugar it was 291, then 256, and a few minutes ago when they checked it it was 381. That's a whole new ballgame. I feel like screaming. I don't know how much more is going to be thrown at her in this one month. What are we looking at with that? Will she need insulin with each meal or just once a day? What's the normal treatment?

I am so completely overwhelmed. I am loaded with questions, tired, miss my other kids, am so far away from home... and most of all, I feel so bad for Kaitlyn. She is handling it all very well, but I know she is scared. And she certainly doesn't like the idea of more daily shots. She's already on growth hormone shots daily...

Thanks for any info.
 
R

ReneeP

New member
As I posted earlier in the week, my 12 year old daughter, Kaitlyn, is in the hospital. She had been completely healthy since the week she turned 3... literally, she has not been sick since then. Until last week... Now it seems that all hell has broken lose on her and it's about to do me in... (and her too, I am sure).

Her FEF 25-75 (which I understand from the dr is small airways) is normally 115 (pre illness)... when we came into the hospital on the 19th it was 29... on the 22nd it was 23. We repeated PFTs today and it still (after 9 days on IV antibiotics) is only 40. The dr is extremely concerned it isn't improving more than that. I am scared she will not recover from this. How long does it take for your numbers to go back up once you've been on IV's for a while? What's normal?

Also, in the midst of all this, today they diagnosed her with CFRD. When they checked her blood sugar it was 291, then 256, and a few minutes ago when they checked it it was 381. That's a whole new ballgame. I feel like screaming. I don't know how much more is going to be thrown at her in this one month. What are we looking at with that? Will she need insulin with each meal or just once a day? What's the normal treatment?

I am so completely overwhelmed. I am loaded with questions, tired, miss my other kids, am so far away from home... and most of all, I feel so bad for Kaitlyn. She is handling it all very well, but I know she is scared. And she certainly doesn't like the idea of more daily shots. She's already on growth hormone shots daily...

Thanks for any info.
 
R

ReneeP

New member
As I posted earlier in the week, my 12 year old daughter, Kaitlyn, is in the hospital. She had been completely healthy since the week she turned 3... literally, she has not been sick since then. Until last week... Now it seems that all hell has broken lose on her and it's about to do me in... (and her too, I am sure).

Her FEF 25-75 (which I understand from the dr is small airways) is normally 115 (pre illness)... when we came into the hospital on the 19th it was 29... on the 22nd it was 23. We repeated PFTs today and it still (after 9 days on IV antibiotics) is only 40. The dr is extremely concerned it isn't improving more than that. I am scared she will not recover from this. How long does it take for your numbers to go back up once you've been on IV's for a while? What's normal?

Also, in the midst of all this, today they diagnosed her with CFRD. When they checked her blood sugar it was 291, then 256, and a few minutes ago when they checked it it was 381. That's a whole new ballgame. I feel like screaming. I don't know how much more is going to be thrown at her in this one month. What are we looking at with that? Will she need insulin with each meal or just once a day? What's the normal treatment?

I am so completely overwhelmed. I am loaded with questions, tired, miss my other kids, am so far away from home... and most of all, I feel so bad for Kaitlyn. She is handling it all very well, but I know she is scared. And she certainly doesn't like the idea of more daily shots. She's already on growth hormone shots daily...

Thanks for any info.
 
A

Alyssa

New member
Renee,

I'm sorry to hear about all of this. Wow, that is a lot to take in. I don't have any experience with anything you listed, so all I can say is hang in there, I'm sure it's tough. Maybe once things settle down it won't seem so overwhelming. (sorry, that probably sounds pretty stupid)

I do know of a teenager with CF and diabetes (type II I think) not CFRD and she has a pump attached to her (it's about the size and look of a pager) she wears around her belt line. I don't know if that the difference is between the two types of diabetes or if the pump would be an option, but if it is at least it is only one stick to get the tube in -- then (I think) she only had to change the tube but no more sticks. I could be totally wrong about that... ask someone who knows more!

How is her FEV1 numbers looking?

Best wishes -- keep us posted.
 
A

Alyssa

New member
Renee,

I'm sorry to hear about all of this. Wow, that is a lot to take in. I don't have any experience with anything you listed, so all I can say is hang in there, I'm sure it's tough. Maybe once things settle down it won't seem so overwhelming. (sorry, that probably sounds pretty stupid)

I do know of a teenager with CF and diabetes (type II I think) not CFRD and she has a pump attached to her (it's about the size and look of a pager) she wears around her belt line. I don't know if that the difference is between the two types of diabetes or if the pump would be an option, but if it is at least it is only one stick to get the tube in -- then (I think) she only had to change the tube but no more sticks. I could be totally wrong about that... ask someone who knows more!

How is her FEV1 numbers looking?

Best wishes -- keep us posted.
 
A

Alyssa

New member
Renee,

I'm sorry to hear about all of this. Wow, that is a lot to take in. I don't have any experience with anything you listed, so all I can say is hang in there, I'm sure it's tough. Maybe once things settle down it won't seem so overwhelming. (sorry, that probably sounds pretty stupid)

I do know of a teenager with CF and diabetes (type II I think) not CFRD and she has a pump attached to her (it's about the size and look of a pager) she wears around her belt line. I don't know if that the difference is between the two types of diabetes or if the pump would be an option, but if it is at least it is only one stick to get the tube in -- then (I think) she only had to change the tube but no more sticks. I could be totally wrong about that... ask someone who knows more!

How is her FEV1 numbers looking?

Best wishes -- keep us posted.
 
J

JRPandTJP

New member
I don't know how to answer your questions or reduce your stress during this time...I only know as a mom, my thoughts are with you and your family. I hope some of the more experienced families/adults can help answer your specific questions.

My heart and thougts are with you. May she recover quickly.

Warmly,
 
J

JRPandTJP

New member
I don't know how to answer your questions or reduce your stress during this time...I only know as a mom, my thoughts are with you and your family. I hope some of the more experienced families/adults can help answer your specific questions.

My heart and thougts are with you. May she recover quickly.

Warmly,
 
J

JRPandTJP

New member
I don't know how to answer your questions or reduce your stress during this time...I only know as a mom, my thoughts are with you and your family. I hope some of the more experienced families/adults can help answer your specific questions.

My heart and thougts are with you. May she recover quickly.

Warmly,
 
D

DEES4

New member
I also do not have any experience with what you are dealing with. I just wanted to say hang in there....I know it is so tough. My son with cf was born 9 days before Christmas and was in the hospital for 9 weeks and then again for 16 days when he was 11 motnhs old. I have 3 other children and missed them so badly when we were away. It is so hard sitting in the hospital watching your child go through all of that. I just wanted to say my prayers are with you and your daughter and I hope she recovers quickly and is home very soon.
Carrie
 
D

DEES4

New member
I also do not have any experience with what you are dealing with. I just wanted to say hang in there....I know it is so tough. My son with cf was born 9 days before Christmas and was in the hospital for 9 weeks and then again for 16 days when he was 11 motnhs old. I have 3 other children and missed them so badly when we were away. It is so hard sitting in the hospital watching your child go through all of that. I just wanted to say my prayers are with you and your daughter and I hope she recovers quickly and is home very soon.
Carrie
 
D

DEES4

New member
I also do not have any experience with what you are dealing with. I just wanted to say hang in there....I know it is so tough. My son with cf was born 9 days before Christmas and was in the hospital for 9 weeks and then again for 16 days when he was 11 motnhs old. I have 3 other children and missed them so badly when we were away. It is so hard sitting in the hospital watching your child go through all of that. I just wanted to say my prayers are with you and your daughter and I hope she recovers quickly and is home very soon.
Carrie
 
R

Rebjane

Super Moderator
Renee,

I'm sorry you both are going through such a tough time. My daughter is still too young to have PFT's, but when she was 2 1/2 she had an awful flareup, where we were in the hospital for 7 days, IV's for some in the hospital and at home and it seemed to take forever for her to get "back to baseline". At the time my daughter had a bronchoscopy to look at her airways, culture and wash out the mucus and bacteria as well(an invasive procedure). She however did pull through but since each CF'er is so individual what med works for one kid may not work for the next. We finally found the meds that helped her and this will change in the future but I hope the docs will figure out a regime that will help your daughter back to her baseline.

the specifics of your questions I don't have the answers. I'm sending good vides to get you through this. Keep asking the questions to the docs. Do they have an diabetes educator at the hospital? Sometimes at the big hospitals, they have a person whose job it is to do diabetic eduation.

Be strong
Rebecca
 
R

Rebjane

Super Moderator
Renee,

I'm sorry you both are going through such a tough time. My daughter is still too young to have PFT's, but when she was 2 1/2 she had an awful flareup, where we were in the hospital for 7 days, IV's for some in the hospital and at home and it seemed to take forever for her to get "back to baseline". At the time my daughter had a bronchoscopy to look at her airways, culture and wash out the mucus and bacteria as well(an invasive procedure). She however did pull through but since each CF'er is so individual what med works for one kid may not work for the next. We finally found the meds that helped her and this will change in the future but I hope the docs will figure out a regime that will help your daughter back to her baseline.

the specifics of your questions I don't have the answers. I'm sending good vides to get you through this. Keep asking the questions to the docs. Do they have an diabetes educator at the hospital? Sometimes at the big hospitals, they have a person whose job it is to do diabetic eduation.

Be strong
Rebecca
 
R

Rebjane

Super Moderator
Renee,

I'm sorry you both are going through such a tough time. My daughter is still too young to have PFT's, but when she was 2 1/2 she had an awful flareup, where we were in the hospital for 7 days, IV's for some in the hospital and at home and it seemed to take forever for her to get "back to baseline". At the time my daughter had a bronchoscopy to look at her airways, culture and wash out the mucus and bacteria as well(an invasive procedure). She however did pull through but since each CF'er is so individual what med works for one kid may not work for the next. We finally found the meds that helped her and this will change in the future but I hope the docs will figure out a regime that will help your daughter back to her baseline.

the specifics of your questions I don't have the answers. I'm sending good vides to get you through this. Keep asking the questions to the docs. Do they have an diabetes educator at the hospital? Sometimes at the big hospitals, they have a person whose job it is to do diabetic eduation.

Be strong
Rebecca
 
R

Ratatosk

Administrator
Staff member
Is she on prednisone at all? That can wreak havoc with blood sugar levels, although I don't know if they'd go that high... Have they run culutures for molds -- aspergillis (sp)?
 
R

Ratatosk

Administrator
Staff member
Is she on prednisone at all? That can wreak havoc with blood sugar levels, although I don't know if they'd go that high... Have they run culutures for molds -- aspergillis (sp)?
 
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