starting solids!

[aggieswifey04]

So the first 4.5 months of Kylie's life she was on a respirator. Which means no feeds went in thru her mouth but by IV and now G-Tube.
They did a swallow study right before we were released at 5 months old and it came back negative. She can't swallow unless its in the back of her throat and then she swallows. She didnt aspirate but still. They advised me to just stick to her feedings thru her g-tube 4x's daily with an over night feed.
Daily Feeds: 110ml/hr - 110ml total (every 4 hrs)
Over night Feeds: 50ml/hr - 500ml total

I thought Id TRY to let her taste the foods. She tasted it the first night and was cool with it till she gagged and coughed on it. I stopped and we tried the next night. She did it longer and enjoyed it. Till she gagged and coughed again. I told her pediatrician and he said keep trying but had to ask about enzymes with her CF team. Well they arent there on the weekends. So I couldnt get ahold of them while on the weekend so I discontinued the solids till I spoke to them. My question is: Do we do enzymes prior to giving her solids even if its before a feeding by gtube and then another dose of enzymes with the gtube feeds? Or can one dose work for both?

Bec

 

[aggieswifey04]

So the first 4.5 months of Kylie's life she was on a respirator. Which means no feeds went in thru her mouth but by IV and now G-Tube.
They did a swallow study right before we were released at 5 months old and it came back negative. She can't swallow unless its in the back of her throat and then she swallows. She didnt aspirate but still. They advised me to just stick to her feedings thru her g-tube 4x's daily with an over night feed.
Daily Feeds: 110ml/hr - 110ml total (every 4 hrs)
Over night Feeds: 50ml/hr - 500ml total

I thought Id TRY to let her taste the foods. She tasted it the first night and was cool with it till she gagged and coughed on it. I stopped and we tried the next night. She did it longer and enjoyed it. Till she gagged and coughed again. I told her pediatrician and he said keep trying but had to ask about enzymes with her CF team. Well they arent there on the weekends. So I couldnt get ahold of them while on the weekend so I discontinued the solids till I spoke to them. My question is: Do we do enzymes prior to giving her solids even if its before a feeding by gtube and then another dose of enzymes with the gtube feeds? Or can one dose work for both?

Bec

 

[aggieswifey04]

So the first 4.5 months of Kylie's life she was on a respirator. Which means no feeds went in thru her mouth but by IV and now G-Tube.
<br />They did a swallow study right before we were released at 5 months old and it came back negative. She can't swallow unless its in the back of her throat and then she swallows. She didnt aspirate but still. They advised me to just stick to her feedings thru her g-tube 4x's daily with an over night feed.
<br />Daily Feeds: 110ml/hr - 110ml total (every 4 hrs)
<br />Over night Feeds: 50ml/hr - 500ml total
<br />
<br />I thought Id TRY to let her taste the foods. She tasted it the first night and was cool with it till she gagged and coughed on it. I stopped and we tried the next night. She did it longer and enjoyed it. Till she gagged and coughed again. I told her pediatrician and he said keep trying but had to ask about enzymes with her CF team. Well they arent there on the weekends. So I couldnt get ahold of them while on the weekend so I discontinued the solids till I spoke to them. My question is: Do we do enzymes prior to giving her solids even if its before a feeding by gtube and then another dose of enzymes with the gtube feeds? Or can one dose work for both?
<br />
<br />Bec

 

[petnurse]

I have ZERO experience with g tubes but I can tell you we were always told enzymes last about 30 minutes. If my son ate slowly then we could either give another after 30 minutes or give 1/2 dose before and 1/2 dose during. That being said, I have seen a lot of people post on here that their doctor told them a different time frame. Hopefully you can reach someone at the clinic today and get their advice. Good luck

 

[petnurse]

I have ZERO experience with g tubes but I can tell you we were always told enzymes last about 30 minutes. If my son ate slowly then we could either give another after 30 minutes or give 1/2 dose before and 1/2 dose during. That being said, I have seen a lot of people post on here that their doctor told them a different time frame. Hopefully you can reach someone at the clinic today and get their advice. Good luck

 

[petnurse]

I have ZERO experience with g tubes but I can tell you we were always told enzymes last about 30 minutes. If my son ate slowly then we could either give another after 30 minutes or give 1/2 dose before and 1/2 dose during. That being said, I have seen a lot of people post on here that their doctor told them a different time frame. Hopefully you can reach someone at the clinic today and get their advice. Good luck

 

[aggieswifey04]

Yea im one of those people who's docs said different time frame. I know for her over night feeds we have to give them to her prior to eating and then again after (10 hrs later). I dont think anyone really knows. I wonder if the enzymes REALLY work then!! ;P

 

[aggieswifey04]

Yea im one of those people who's docs said different time frame. I know for her over night feeds we have to give them to her prior to eating and then again after (10 hrs later). I dont think anyone really knows. I wonder if the enzymes REALLY work then!! ;P

 

[aggieswifey04]

Yea im one of those people who's docs said different time frame. I know for her over night feeds we have to give them to her prior to eating and then again after (10 hrs later). I dont think anyone really knows. I wonder if the enzymes REALLY work then!! ;P

 

[kellyga]

We have always been told that after 1 hour, you need to give another full dose. Or for children who eat slowly you can give half dose then at 30 minutes give other half

 

[kellyga]

We have always been told that after 1 hour, you need to give another full dose. Or for children who eat slowly you can give half dose then at 30 minutes give other half

 

[kellyga]

We have always been told that after 1 hour, you need to give another full dose. Or for children who eat slowly you can give half dose then at 30 minutes give other half