Graysons huge step back

T

Tcole

New member
As a lot of you may have spoke to my mom on this forum, nanaof8girls. I am now reaching for your help. Grayson was born May 18th with MI. Had her take down in July. The doctors were trying to let her feed on her own and see how she could do. (this was the first time she was able for bottle feed since birth.)They took her off of TPN and all fluids. Of course, she did poor. So now my Graycie is not gaining weight. Actually she is losing weight consistantly every day. She has been on Elecare, Pregestimil, and now Peptimin Junior. She has been dumping, she got dehydrated and needed IV fluids. Today she was supposed to get her G-tube. But instead she's getting a PICC line back in. They haven't fed my baby girl for over 24 hrs. Not even pedialite. I talked to the doctors on rounds yesterday AGAIN and asked about feeding her food and or giving coconut oil. They don't want to even listen to me. They can't make any decisions until they talk to her nutritionist and she never comes sees graycie. I don't remember even meeting this doctor.

I read other stories that are simular to mine but your babies were not in the hospital for 4 months. Why cant they figure this out. I am so broke cuz of traveling to see her. Im running out of money to drive to even see my baby girl.

So my real question is, what did it take to get your baby growing to come home? She is almost 4 months and weighs 10 lbs 10 oz.
 
T

Tcole

New member
As a lot of you may have spoke to my mom on this forum, nanaof8girls. I am now reaching for your help. Grayson was born May 18th with MI. Had her take down in July. The doctors were trying to let her feed on her own and see how she could do. (this was the first time she was able for bottle feed since birth.)They took her off of TPN and all fluids. Of course, she did poor. So now my Graycie is not gaining weight. Actually she is losing weight consistantly every day. She has been on Elecare, Pregestimil, and now Peptimin Junior. She has been dumping, she got dehydrated and needed IV fluids. Today she was supposed to get her G-tube. But instead she's getting a PICC line back in. They haven't fed my baby girl for over 24 hrs. Not even pedialite. I talked to the doctors on rounds yesterday AGAIN and asked about feeding her food and or giving coconut oil. They don't want to even listen to me. They can't make any decisions until they talk to her nutritionist and she never comes sees graycie. I don't remember even meeting this doctor.

I read other stories that are simular to mine but your babies were not in the hospital for 4 months. Why cant they figure this out. I am so broke cuz of traveling to see her. Im running out of money to drive to even see my baby girl.

So my real question is, what did it take to get your baby growing to come home? She is almost 4 months and weighs 10 lbs 10 oz.
 
T

Tcole

New member
As a lot of you may have spoke to my mom on this forum, nanaof8girls. I am now reaching for your help. Grayson was born May 18th with MI. Had her take down in July. The doctors were trying to let her feed on her own and see how she could do. (this was the first time she was able for bottle feed since birth.)They took her off of TPN and all fluids. Of course, she did poor. So now my Graycie is not gaining weight. Actually she is losing weight consistantly every day. She has been on Elecare, Pregestimil, and now Peptimin Junior. She has been dumping, she got dehydrated and needed IV fluids. Today she was supposed to get her G-tube. But instead she's getting a PICC line back in. They haven't fed my baby girl for over 24 hrs. Not even pedialite. I talked to the doctors on rounds yesterday AGAIN and asked about feeding her food and or giving coconut oil. They don't want to even listen to me. They can't make any decisions until they talk to her nutritionist and she never comes sees graycie. I don't remember even meeting this doctor.

I read other stories that are simular to mine but your babies were not in the hospital for 4 months. Why cant they figure this out. I am so broke cuz of traveling to see her. Im running out of money to drive to even see my baby girl.

So my real question is, what did it take to get your baby growing to come home? She is almost 4 months and weighs 10 lbs 10 oz.
 
T

Tcole

New member
As a lot of you may have spoke to my mom on this forum, nanaof8girls. I am now reaching for your help. Grayson was born May 18th with MI. Had her take down in July. The doctors were trying to let her feed on her own and see how she could do. (this was the first time she was able for bottle feed since birth.)They took her off of TPN and all fluids. Of course, she did poor. So now my Graycie is not gaining weight. Actually she is losing weight consistantly every day. She has been on Elecare, Pregestimil, and now Peptimin Junior. She has been dumping, she got dehydrated and needed IV fluids. Today she was supposed to get her G-tube. But instead she's getting a PICC line back in. They haven't fed my baby girl for over 24 hrs. Not even pedialite. I talked to the doctors on rounds yesterday AGAIN and asked about feeding her food and or giving coconut oil. They don't want to even listen to me. They can't make any decisions until they talk to her nutritionist and she never comes sees graycie. I don't remember even meeting this doctor.

I read other stories that are simular to mine but your babies were not in the hospital for 4 months. Why cant they figure this out. I am so broke cuz of traveling to see her. Im running out of money to drive to even see my baby girl.

So my real question is, what did it take to get your baby growing to come home? She is almost 4 months and weighs 10 lbs 10 oz.
 
T

Tcole

New member
As a lot of you may have spoke to my mom on this forum, nanaof8girls. I am now reaching for your help. Grayson was born May 18th with MI. Had her take down in July. The doctors were trying to let her feed on her own and see how she could do. (this was the first time she was able for bottle feed since birth.)They took her off of TPN and all fluids. Of course, she did poor. So now my Graycie is not gaining weight. Actually she is losing weight consistantly every day. She has been on Elecare, Pregestimil, and now Peptimin Junior. She has been dumping, she got dehydrated and needed IV fluids. Today she was supposed to get her G-tube. But instead she's getting a PICC line back in. They haven't fed my baby girl for over 24 hrs. Not even pedialite. I talked to the doctors on rounds yesterday AGAIN and asked about feeding her food and or giving coconut oil. They don't want to even listen to me. They can't make any decisions until they talk to her nutritionist and she never comes sees graycie. I don't remember even meeting this doctor.
<br />
<br />I read other stories that are simular to mine but your babies were not in the hospital for 4 months. Why cant they figure this out. I am so broke cuz of traveling to see her. Im running out of money to drive to even see my baby girl.
<br />
<br />So my real question is, what did it take to get your baby growing to come home? She is almost 4 months and weighs 10 lbs 10 oz.
<br />
<br />
 
R

Ratatosk

Administrator
Staff member
I'm assuming they've got her on enzymes... I recall a similar story a few years ago and they weren't giving the child enzymes, hadn't checked for pancreatic insufficiency, though with Meconium Illeus, it's usually assumed that they're PI and need enzymes.

What do some of the her nurses think? With DS, he needed time to heal, then they tapered off the TPN, but still gave him IVs, we started off with pedialyte, then very small amounts of formula with probably half a capsule of enzymes. He was on pregestimil, but hated it, so his doctor told them to "feed him what he'll eat".

IMO, tell the nurse you need to see the dietician, speak with the doctors and figure out a game plan. Do you have a primary CF doctor yet. One of our issues was we had several doctors with differing opinions and once we chose our CF doctor, things were a bit more manageable.

Once we got DS home, we still had to feed him every 3-4 hours. We set our alarm at night to feed him. He'd sleep thru it, but it was important to try to regain weight he'd lost. He was also put on higher calorie formula -- greater powder/concentrate to water ratio. I think he was put on 24 calorie infamil lipil while he was still in the hospital recovering...
 
R

Ratatosk

Administrator
Staff member
I'm assuming they've got her on enzymes... I recall a similar story a few years ago and they weren't giving the child enzymes, hadn't checked for pancreatic insufficiency, though with Meconium Illeus, it's usually assumed that they're PI and need enzymes.

What do some of the her nurses think? With DS, he needed time to heal, then they tapered off the TPN, but still gave him IVs, we started off with pedialyte, then very small amounts of formula with probably half a capsule of enzymes. He was on pregestimil, but hated it, so his doctor told them to "feed him what he'll eat".

IMO, tell the nurse you need to see the dietician, speak with the doctors and figure out a game plan. Do you have a primary CF doctor yet. One of our issues was we had several doctors with differing opinions and once we chose our CF doctor, things were a bit more manageable.

Once we got DS home, we still had to feed him every 3-4 hours. We set our alarm at night to feed him. He'd sleep thru it, but it was important to try to regain weight he'd lost. He was also put on higher calorie formula -- greater powder/concentrate to water ratio. I think he was put on 24 calorie infamil lipil while he was still in the hospital recovering...
 
R

Ratatosk

Administrator
Staff member
I'm assuming they've got her on enzymes... I recall a similar story a few years ago and they weren't giving the child enzymes, hadn't checked for pancreatic insufficiency, though with Meconium Illeus, it's usually assumed that they're PI and need enzymes.

What do some of the her nurses think? With DS, he needed time to heal, then they tapered off the TPN, but still gave him IVs, we started off with pedialyte, then very small amounts of formula with probably half a capsule of enzymes. He was on pregestimil, but hated it, so his doctor told them to "feed him what he'll eat".

IMO, tell the nurse you need to see the dietician, speak with the doctors and figure out a game plan. Do you have a primary CF doctor yet. One of our issues was we had several doctors with differing opinions and once we chose our CF doctor, things were a bit more manageable.

Once we got DS home, we still had to feed him every 3-4 hours. We set our alarm at night to feed him. He'd sleep thru it, but it was important to try to regain weight he'd lost. He was also put on higher calorie formula -- greater powder/concentrate to water ratio. I think he was put on 24 calorie infamil lipil while he was still in the hospital recovering...
 
R

Ratatosk

Administrator
Staff member
I'm assuming they've got her on enzymes... I recall a similar story a few years ago and they weren't giving the child enzymes, hadn't checked for pancreatic insufficiency, though with Meconium Illeus, it's usually assumed that they're PI and need enzymes.

What do some of the her nurses think? With DS, he needed time to heal, then they tapered off the TPN, but still gave him IVs, we started off with pedialyte, then very small amounts of formula with probably half a capsule of enzymes. He was on pregestimil, but hated it, so his doctor told them to "feed him what he'll eat".

IMO, tell the nurse you need to see the dietician, speak with the doctors and figure out a game plan. Do you have a primary CF doctor yet. One of our issues was we had several doctors with differing opinions and once we chose our CF doctor, things were a bit more manageable.

Once we got DS home, we still had to feed him every 3-4 hours. We set our alarm at night to feed him. He'd sleep thru it, but it was important to try to regain weight he'd lost. He was also put on higher calorie formula -- greater powder/concentrate to water ratio. I think he was put on 24 calorie infamil lipil while he was still in the hospital recovering...
 
R

Ratatosk

Administrator
Staff member
I'm assuming they've got her on enzymes... I recall a similar story a few years ago and they weren't giving the child enzymes, hadn't checked for pancreatic insufficiency, though with Meconium Illeus, it's usually assumed that they're PI and need enzymes.
<br />
<br />What do some of the her nurses think? With DS, he needed time to heal, then they tapered off the TPN, but still gave him IVs, we started off with pedialyte, then very small amounts of formula with probably half a capsule of enzymes. He was on pregestimil, but hated it, so his doctor told them to "feed him what he'll eat".
<br />
<br />IMO, tell the nurse you need to see the dietician, speak with the doctors and figure out a game plan. Do you have a primary CF doctor yet. One of our issues was we had several doctors with differing opinions and once we chose our CF doctor, things were a bit more manageable.
<br />
<br />Once we got DS home, we still had to feed him every 3-4 hours. We set our alarm at night to feed him. He'd sleep thru it, but it was important to try to regain weight he'd lost. He was also put on higher calorie formula -- greater powder/concentrate to water ratio. I think he was put on 24 calorie infamil lipil while he was still in the hospital recovering...
 
R

Ratatosk

Administrator
Staff member
Another thing we discussed with his doctor was being transferred to our local hospital. We were at a children's hospital 250 miles from home. DS recovered from his surgery; however, had contracted a couple of infections requiring IV antibiotics a few times. We were looking into a transfer, when they decided he could go home, where they'd hoped he'd regain the weight. Unfortunately, he got sick again, couldn't keep anything down and ended up back in the local hospital for two weeks on IV abx because he cultured yet another nasty bug.
 
R

Ratatosk

Administrator
Staff member
Another thing we discussed with his doctor was being transferred to our local hospital. We were at a children's hospital 250 miles from home. DS recovered from his surgery; however, had contracted a couple of infections requiring IV antibiotics a few times. We were looking into a transfer, when they decided he could go home, where they'd hoped he'd regain the weight. Unfortunately, he got sick again, couldn't keep anything down and ended up back in the local hospital for two weeks on IV abx because he cultured yet another nasty bug.
 
R

Ratatosk

Administrator
Staff member
Another thing we discussed with his doctor was being transferred to our local hospital. We were at a children's hospital 250 miles from home. DS recovered from his surgery; however, had contracted a couple of infections requiring IV antibiotics a few times. We were looking into a transfer, when they decided he could go home, where they'd hoped he'd regain the weight. Unfortunately, he got sick again, couldn't keep anything down and ended up back in the local hospital for two weeks on IV abx because he cultured yet another nasty bug.
 
R

Ratatosk

Administrator
Staff member
Another thing we discussed with his doctor was being transferred to our local hospital. We were at a children's hospital 250 miles from home. DS recovered from his surgery; however, had contracted a couple of infections requiring IV antibiotics a few times. We were looking into a transfer, when they decided he could go home, where they'd hoped he'd regain the weight. Unfortunately, he got sick again, couldn't keep anything down and ended up back in the local hospital for two weeks on IV abx because he cultured yet another nasty bug.
 
R

Ratatosk

Administrator
Staff member
Another thing we discussed with his doctor was being transferred to our local hospital. We were at a children's hospital 250 miles from home. DS recovered from his surgery; however, had contracted a couple of infections requiring IV antibiotics a few times. We were looking into a transfer, when they decided he could go home, where they'd hoped he'd regain the weight. Unfortunately, he got sick again, couldn't keep anything down and ended up back in the local hospital for two weeks on IV abx because he cultured yet another nasty bug.
 
J

JORDYSMOM

New member
I am just so sorry that you are going through this with Graycie. Are they giving her enzymes? If so, have they tried adjusting them? They keep changing her formula, but if she can't absorb it, it won't matter what they give her.

You may have to become really pushy with the hospital staff. Demand to speak to the nutritionist. Make sure he/she understands CF, and the special needs it brings. I hope you are at an accredited CF hospital. Make the doctor sit down with you, and tell you exactly what his/her plan of action is for your daughter.

I sincerely hope that you find the answers to help your daughter very soon. Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
I am just so sorry that you are going through this with Graycie. Are they giving her enzymes? If so, have they tried adjusting them? They keep changing her formula, but if she can't absorb it, it won't matter what they give her.

You may have to become really pushy with the hospital staff. Demand to speak to the nutritionist. Make sure he/she understands CF, and the special needs it brings. I hope you are at an accredited CF hospital. Make the doctor sit down with you, and tell you exactly what his/her plan of action is for your daughter.

I sincerely hope that you find the answers to help your daughter very soon. Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
I am just so sorry that you are going through this with Graycie. Are they giving her enzymes? If so, have they tried adjusting them? They keep changing her formula, but if she can't absorb it, it won't matter what they give her.

You may have to become really pushy with the hospital staff. Demand to speak to the nutritionist. Make sure he/she understands CF, and the special needs it brings. I hope you are at an accredited CF hospital. Make the doctor sit down with you, and tell you exactly what his/her plan of action is for your daughter.

I sincerely hope that you find the answers to help your daughter very soon. Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
I am just so sorry that you are going through this with Graycie. Are they giving her enzymes? If so, have they tried adjusting them? They keep changing her formula, but if she can't absorb it, it won't matter what they give her.

You may have to become really pushy with the hospital staff. Demand to speak to the nutritionist. Make sure he/she understands CF, and the special needs it brings. I hope you are at an accredited CF hospital. Make the doctor sit down with you, and tell you exactly what his/her plan of action is for your daughter.

I sincerely hope that you find the answers to help your daughter very soon. Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
I am just so sorry that you are going through this with Graycie. Are they giving her enzymes? If so, have they tried adjusting them? They keep changing her formula, but if she can't absorb it, it won't matter what they give her.
<br />
<br />You may have to become really pushy with the hospital staff. Demand to speak to the nutritionist. Make sure he/she understands CF, and the special needs it brings. I hope you are at an accredited CF hospital. Make the doctor sit down with you, and tell you exactly what his/her plan of action is for your daughter.
<br />
<br />I sincerely hope that you find the answers to help your daughter very soon. Please keep us posted.
<br />
<br />Stacey
 
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