Graysons huge step back

SARAHSARAH253 · Sep 3, 2008

Our son was born last August 17th with meconium illius also. He was born in one hospital and then transfered to another a couple days later. There they ran test and found they meconium illius. Three days later the surgery to fix his tummy...We waited three long weeks, and had the reconnection. That's when we found out his fecal elaste test came back. That when we were introduced to the world of CF. The CF doc came right over and taught the nurse and my husband and I about enzymes along with everything else. Over that weekend we did all are grieving....on the Monday morning. I got the call to come room in with my baby. I had him all alone with no machines for the 1st time. I stayed up all night with the nurses, and the next morning I was taught how to give him his CPT. I remember asking over and over how soon after his reconnection can we take him home. I got the same answer as soon is he is tolerating feeds, and on demand. He started off with pedialyte, and then onto pregestimil. So, it was a week after reconnection that we got to take him home. My husband said after they found out that he had CF...."Trust me they want him out there bad as you do"......I think there might of been some truth to that now..I'm sorry it's taking so long......I remember being so angry and frustrated...It kills you that you have little control.....It will get better!

SARAHSARAH253 · Sep 3, 2008

Our son was born last August 17th with meconium illius also. He was born in one hospital and then transfered to another a couple days later. There they ran test and found they meconium illius. Three days later the surgery to fix his tummy...We waited three long weeks, and had the reconnection. That's when we found out his fecal elaste test came back. That when we were introduced to the world of CF. The CF doc came right over and taught the nurse and my husband and I about enzymes along with everything else. Over that weekend we did all are grieving....on the Monday morning. I got the call to come room in with my baby. I had him all alone with no machines for the 1st time. I stayed up all night with the nurses, and the next morning I was taught how to give him his CPT. I remember asking over and over how soon after his reconnection can we take him home. I got the same answer as soon is he is tolerating feeds, and on demand. He started off with pedialyte, and then onto pregestimil. So, it was a week after reconnection that we got to take him home. My husband said after they found out that he had CF...."Trust me they want him out there bad as you do"......I think there might of been some truth to that now..I'm sorry it's taking so long......I remember being so angry and frustrated...It kills you that you have little control.....It will get better!

SARAHSARAH253 · Sep 3, 2008

Our son was born last August 17th with meconium illius also. He was born in one hospital and then transfered to another a couple days later. There they ran test and found they meconium illius. Three days later the surgery to fix his tummy...We waited three long weeks, and had the reconnection. That's when we found out his fecal elaste test came back. That when we were introduced to the world of CF. The CF doc came right over and taught the nurse and my husband and I about enzymes along with everything else. Over that weekend we did all are grieving....on the Monday morning. I got the call to come room in with my baby. I had him all alone with no machines for the 1st time. I stayed up all night with the nurses, and the next morning I was taught how to give him his CPT. I remember asking over and over how soon after his reconnection can we take him home. I got the same answer as soon is he is tolerating feeds, and on demand. He started off with pedialyte, and then onto pregestimil. So, it was a week after reconnection that we got to take him home. My husband said after they found out that he had CF...."Trust me they want him out there bad as you do"......I think there might of been some truth to that now..I'm sorry it's taking so long......I remember being so angry and frustrated...It kills you that you have little control.....It will get better!

SARAHSARAH253 · Sep 3, 2008

Our son was born last August 17th with meconium illius also. He was born in one hospital and then transfered to another a couple days later. There they ran test and found they meconium illius. Three days later the surgery to fix his tummy...We waited three long weeks, and had the reconnection. That's when we found out his fecal elaste test came back. That when we were introduced to the world of CF. The CF doc came right over and taught the nurse and my husband and I about enzymes along with everything else. Over that weekend we did all are grieving....on the Monday morning. I got the call to come room in with my baby. I had him all alone with no machines for the 1st time. I stayed up all night with the nurses, and the next morning I was taught how to give him his CPT. I remember asking over and over how soon after his reconnection can we take him home. I got the same answer as soon is he is tolerating feeds, and on demand. He started off with pedialyte, and then onto pregestimil. So, it was a week after reconnection that we got to take him home. My husband said after they found out that he had CF...."Trust me they want him out there bad as you do"......I think there might of been some truth to that now..I'm sorry it's taking so long......I remember being so angry and frustrated...It kills you that you have little control.....It will get better!

SARAHSARAH253 · Sep 3, 2008

Our son was born last August 17th with meconium illius also. He was born in one hospital and then transfered to another a couple days later. There they ran test and found they meconium illius. Three days later the surgery to fix his tummy...We waited three long weeks, and had the reconnection. That's when we found out his fecal elaste test came back. That when we were introduced to the world of CF. The CF doc came right over and taught the nurse and my husband and I about enzymes along with everything else. Over that weekend we did all are grieving....on the Monday morning. I got the call to come room in with my baby. I had him all alone with no machines for the 1st time. I stayed up all night with the nurses, and the next morning I was taught how to give him his CPT. I remember asking over and over how soon after his reconnection can we take him home. I got the same answer as soon is he is tolerating feeds, and on demand. He started off with pedialyte, and then onto pregestimil. So, it was a week after reconnection that we got to take him home. My husband said after they found out that he had CF...."Trust me they want him out there bad as you do"......I think there might of been some truth to that now..I'm sorry it's taking so long......I remember being so angry and frustrated...It kills you that you have little control.....It will get better!

usedtobeinca · Sep 3, 2008

So sorry to know that your little one is having trouble gaining. Our beginning was similar though not 4mo in duration. During our war of gaining, dumping, dehydration, etc Thomas was put first on Neocate and later switched to Pregestimil with polycose powder to add calories. He had a specific volume goal and feedings were every 2hrs. He was about the same weight you're describing at 4mo and gained well after his ileostomy take-down. We timed our feedings to 30min max to maximize calorie intake and minimize loss. A swallow study was also performed to understand why he kept spitting up. He was diagnosed with reflux (common) and put on omeprazole. He was also started on pancreatic enzyme supplements hidden in pear sauce or similar. All of this combined to get Thomas gaining.

Forgot this - Thomas also had an NG tube and night tube feeds were needed when he didn't meet his volume goal.

Your nutritionist needs to get on this pronto. This can be overcome, hang in there. Our prayers are with you.

usedtobeinca · Sep 3, 2008

So sorry to know that your little one is having trouble gaining. Our beginning was similar though not 4mo in duration. During our war of gaining, dumping, dehydration, etc Thomas was put first on Neocate and later switched to Pregestimil with polycose powder to add calories. He had a specific volume goal and feedings were every 2hrs. He was about the same weight you're describing at 4mo and gained well after his ileostomy take-down. We timed our feedings to 30min max to maximize calorie intake and minimize loss. A swallow study was also performed to understand why he kept spitting up. He was diagnosed with reflux (common) and put on omeprazole. He was also started on pancreatic enzyme supplements hidden in pear sauce or similar. All of this combined to get Thomas gaining.

Forgot this - Thomas also had an NG tube and night tube feeds were needed when he didn't meet his volume goal.

Your nutritionist needs to get on this pronto. This can be overcome, hang in there. Our prayers are with you.

usedtobeinca · Sep 3, 2008

So sorry to know that your little one is having trouble gaining. Our beginning was similar though not 4mo in duration. During our war of gaining, dumping, dehydration, etc Thomas was put first on Neocate and later switched to Pregestimil with polycose powder to add calories. He had a specific volume goal and feedings were every 2hrs. He was about the same weight you're describing at 4mo and gained well after his ileostomy take-down. We timed our feedings to 30min max to maximize calorie intake and minimize loss. A swallow study was also performed to understand why he kept spitting up. He was diagnosed with reflux (common) and put on omeprazole. He was also started on pancreatic enzyme supplements hidden in pear sauce or similar. All of this combined to get Thomas gaining.

Forgot this - Thomas also had an NG tube and night tube feeds were needed when he didn't meet his volume goal.

Your nutritionist needs to get on this pronto. This can be overcome, hang in there. Our prayers are with you.

usedtobeinca · Sep 3, 2008

So sorry to know that your little one is having trouble gaining. Our beginning was similar though not 4mo in duration. During our war of gaining, dumping, dehydration, etc Thomas was put first on Neocate and later switched to Pregestimil with polycose powder to add calories. He had a specific volume goal and feedings were every 2hrs. He was about the same weight you're describing at 4mo and gained well after his ileostomy take-down. We timed our feedings to 30min max to maximize calorie intake and minimize loss. A swallow study was also performed to understand why he kept spitting up. He was diagnosed with reflux (common) and put on omeprazole. He was also started on pancreatic enzyme supplements hidden in pear sauce or similar. All of this combined to get Thomas gaining.

Forgot this - Thomas also had an NG tube and night tube feeds were needed when he didn't meet his volume goal.

Your nutritionist needs to get on this pronto. This can be overcome, hang in there. Our prayers are with you.

usedtobeinca · Sep 3, 2008

So sorry to know that your little one is having trouble gaining. Our beginning was similar though not 4mo in duration. During our war of gaining, dumping, dehydration, etc Thomas was put first on Neocate and later switched to Pregestimil with polycose powder to add calories. He had a specific volume goal and feedings were every 2hrs. He was about the same weight you're describing at 4mo and gained well after his ileostomy take-down. We timed our feedings to 30min max to maximize calorie intake and minimize loss. A swallow study was also performed to understand why he kept spitting up. He was diagnosed with reflux (common) and put on omeprazole. He was also started on pancreatic enzyme supplements hidden in pear sauce or similar. All of this combined to get Thomas gaining.
 
 Forgot this - Thomas also had an NG tube and night tube feeds were needed when he didn't meet his volume goal.
 
 Your nutritionist needs to get on this pronto. This can be overcome, hang in there. Our prayers are with you.

Nicole · Sep 3, 2008

I haven't read through all the responses so forgive me if I repeat what anyone else has said. Our son was in the hospital for 49 days before he came home. Emotionally and physically I was just drained--felt like I had nothing else to give. There were days when I would go to the hospital, just hold him, and sit there and bawl like a baby. I wanted to unhook him from everything, grab him, run through the halls of the hospital like a crazy woman, out the door and just go home. Pretend like all of this wasn't real, wasn't happening. We also had the issues of no weight gain and it was so frustrating. I also felt like I couldn't get a straight answer from any of the doctors. With the suggestion from a good friend I asked for him to be released and for us to have a home health nurse. At first they basically laughed at me and said no way. I was persistent and in the end, with the help of a great doc, they finally agreed. He would get to come home with a PICC, on TPN, lipids, antibiotics, an ileostomy, and an NG tube. I'm not saying it was easy but at that point I felt like we would have done anything to have him home. It was rough at first but we finally got into a routine that worked for us. He started eating more from the bottle and began putting on weight. A month or so later, he went back in to have his ostomy taken down and again he had the same feeding issues and they wanted to keep him in. I said no, we are going to get him home and back into his routine. Again, the feeding improved and eventually he was taken off TPN/Lipids and his PICC was removed. I don't know how stable your child is but this might be something to look into. I didn't even know it might be a possibility until my friend mentioned it. It made a world of difference for our family. I wish you all the best and hope that things start to get better for you really soon!

Nicole · Sep 3, 2008

I haven't read through all the responses so forgive me if I repeat what anyone else has said. Our son was in the hospital for 49 days before he came home. Emotionally and physically I was just drained--felt like I had nothing else to give. There were days when I would go to the hospital, just hold him, and sit there and bawl like a baby. I wanted to unhook him from everything, grab him, run through the halls of the hospital like a crazy woman, out the door and just go home. Pretend like all of this wasn't real, wasn't happening. We also had the issues of no weight gain and it was so frustrating. I also felt like I couldn't get a straight answer from any of the doctors. With the suggestion from a good friend I asked for him to be released and for us to have a home health nurse. At first they basically laughed at me and said no way. I was persistent and in the end, with the help of a great doc, they finally agreed. He would get to come home with a PICC, on TPN, lipids, antibiotics, an ileostomy, and an NG tube. I'm not saying it was easy but at that point I felt like we would have done anything to have him home. It was rough at first but we finally got into a routine that worked for us. He started eating more from the bottle and began putting on weight. A month or so later, he went back in to have his ostomy taken down and again he had the same feeding issues and they wanted to keep him in. I said no, we are going to get him home and back into his routine. Again, the feeding improved and eventually he was taken off TPN/Lipids and his PICC was removed. I don't know how stable your child is but this might be something to look into. I didn't even know it might be a possibility until my friend mentioned it. It made a world of difference for our family. I wish you all the best and hope that things start to get better for you really soon!

Nicole · Sep 3, 2008

I haven't read through all the responses so forgive me if I repeat what anyone else has said. Our son was in the hospital for 49 days before he came home. Emotionally and physically I was just drained--felt like I had nothing else to give. There were days when I would go to the hospital, just hold him, and sit there and bawl like a baby. I wanted to unhook him from everything, grab him, run through the halls of the hospital like a crazy woman, out the door and just go home. Pretend like all of this wasn't real, wasn't happening. We also had the issues of no weight gain and it was so frustrating. I also felt like I couldn't get a straight answer from any of the doctors. With the suggestion from a good friend I asked for him to be released and for us to have a home health nurse. At first they basically laughed at me and said no way. I was persistent and in the end, with the help of a great doc, they finally agreed. He would get to come home with a PICC, on TPN, lipids, antibiotics, an ileostomy, and an NG tube. I'm not saying it was easy but at that point I felt like we would have done anything to have him home. It was rough at first but we finally got into a routine that worked for us. He started eating more from the bottle and began putting on weight. A month or so later, he went back in to have his ostomy taken down and again he had the same feeding issues and they wanted to keep him in. I said no, we are going to get him home and back into his routine. Again, the feeding improved and eventually he was taken off TPN/Lipids and his PICC was removed. I don't know how stable your child is but this might be something to look into. I didn't even know it might be a possibility until my friend mentioned it. It made a world of difference for our family. I wish you all the best and hope that things start to get better for you really soon!

Nicole · Sep 3, 2008

I haven't read through all the responses so forgive me if I repeat what anyone else has said. Our son was in the hospital for 49 days before he came home. Emotionally and physically I was just drained--felt like I had nothing else to give. There were days when I would go to the hospital, just hold him, and sit there and bawl like a baby. I wanted to unhook him from everything, grab him, run through the halls of the hospital like a crazy woman, out the door and just go home. Pretend like all of this wasn't real, wasn't happening. We also had the issues of no weight gain and it was so frustrating. I also felt like I couldn't get a straight answer from any of the doctors. With the suggestion from a good friend I asked for him to be released and for us to have a home health nurse. At first they basically laughed at me and said no way. I was persistent and in the end, with the help of a great doc, they finally agreed. He would get to come home with a PICC, on TPN, lipids, antibiotics, an ileostomy, and an NG tube. I'm not saying it was easy but at that point I felt like we would have done anything to have him home. It was rough at first but we finally got into a routine that worked for us. He started eating more from the bottle and began putting on weight. A month or so later, he went back in to have his ostomy taken down and again he had the same feeding issues and they wanted to keep him in. I said no, we are going to get him home and back into his routine. Again, the feeding improved and eventually he was taken off TPN/Lipids and his PICC was removed. I don't know how stable your child is but this might be something to look into. I didn't even know it might be a possibility until my friend mentioned it. It made a world of difference for our family. I wish you all the best and hope that things start to get better for you really soon!

Nicole · Sep 3, 2008

I haven't read through all the responses so forgive me if I repeat what anyone else has said. Our son was in the hospital for 49 days before he came home. Emotionally and physically I was just drained--felt like I had nothing else to give. There were days when I would go to the hospital, just hold him, and sit there and bawl like a baby. I wanted to unhook him from everything, grab him, run through the halls of the hospital like a crazy woman, out the door and just go home. Pretend like all of this wasn't real, wasn't happening. We also had the issues of no weight gain and it was so frustrating. I also felt like I couldn't get a straight answer from any of the doctors. With the suggestion from a good friend I asked for him to be released and for us to have a home health nurse. At first they basically laughed at me and said no way. I was persistent and in the end, with the help of a great doc, they finally agreed. He would get to come home with a PICC, on TPN, lipids, antibiotics, an ileostomy, and an NG tube. I'm not saying it was easy but at that point I felt like we would have done anything to have him home. It was rough at first but we finally got into a routine that worked for us. He started eating more from the bottle and began putting on weight. A month or so later, he went back in to have his ostomy taken down and again he had the same feeding issues and they wanted to keep him in. I said no, we are going to get him home and back into his routine. Again, the feeding improved and eventually he was taken off TPN/Lipids and his PICC was removed. I don't know how stable your child is but this might be something to look into. I didn't even know it might be a possibility until my friend mentioned it. It made a world of difference for our family. I wish you all the best and hope that things start to get better for you really soon!

sdelorenzo · Sep 3, 2008

I am sorry about everything your daughter, you and your family are going through. Sounds like things are a bit out of control. First of all, are you at a cf center? That is important because you want drs who are familiar with cf patients and MI. You can find out by going to
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithC...tedCareCenters/
">"><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
 http://www.cff.org/LivingWithC...areCenters/
</a></a>

What type of drs are the one making the decisions about your daughter? Are they GI drs familiar with treating cf patients? My son was born with MI and his GI came by everyday and spoke to us about our son's treatment plan. We discussed each day what was the exact plan (enzymes, diet, weight gain goal, etc). A GI dr is a dr who specializes in gastroenterology. They know TONS more than nutritionists. They should know exactly why a cf baby isn't gaining weight and all of the things that can be done. Nutritionists are not drs. If a nutritionist is your only option at this point find out their name. Go by their office and sit at their desk until they speak with you.

You need to start making things happen around there. Don't put up with the run-around. Grayson is YOUR daughter and you need a lot more answers. If you have to move hospitals to one that has drs that are more experienced and can deal with her care better, then make it happen. I asked for my son to move hospital his first week when I saw the nurses, radiologists, etc had never dealt with cf even though his drs were very experienced in dealing with cf. Changing hospitals was one of the best decisions we made. The new radiologist cleared his intestinal blockage on the first try. This new radiologist had dealt with it before he knew what needed to be done. Hope she comes home soon.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Sep 3, 2008

I am sorry about everything your daughter, you and your family are going through. Sounds like things are a bit out of control. First of all, are you at a cf center? That is important because you want drs who are familiar with cf patients and MI. You can find out by going to
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithC...tedCareCenters/
">"><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
 http://www.cff.org/LivingWithC...areCenters/
</a></a>

What type of drs are the one making the decisions about your daughter? Are they GI drs familiar with treating cf patients? My son was born with MI and his GI came by everyday and spoke to us about our son's treatment plan. We discussed each day what was the exact plan (enzymes, diet, weight gain goal, etc). A GI dr is a dr who specializes in gastroenterology. They know TONS more than nutritionists. They should know exactly why a cf baby isn't gaining weight and all of the things that can be done. Nutritionists are not drs. If a nutritionist is your only option at this point find out their name. Go by their office and sit at their desk until they speak with you.

You need to start making things happen around there. Don't put up with the run-around. Grayson is YOUR daughter and you need a lot more answers. If you have to move hospitals to one that has drs that are more experienced and can deal with her care better, then make it happen. I asked for my son to move hospital his first week when I saw the nurses, radiologists, etc had never dealt with cf even though his drs were very experienced in dealing with cf. Changing hospitals was one of the best decisions we made. The new radiologist cleared his intestinal blockage on the first try. This new radiologist had dealt with it before he knew what needed to be done. Hope she comes home soon.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Sep 3, 2008

I am sorry about everything your daughter, you and your family are going through. Sounds like things are a bit out of control. First of all, are you at a cf center? That is important because you want drs who are familiar with cf patients and MI. You can find out by going to
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithC...tedCareCenters/
">"><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
 http://www.cff.org/LivingWithC...areCenters/
</a></a>

What type of drs are the one making the decisions about your daughter? Are they GI drs familiar with treating cf patients? My son was born with MI and his GI came by everyday and spoke to us about our son's treatment plan. We discussed each day what was the exact plan (enzymes, diet, weight gain goal, etc). A GI dr is a dr who specializes in gastroenterology. They know TONS more than nutritionists. They should know exactly why a cf baby isn't gaining weight and all of the things that can be done. Nutritionists are not drs. If a nutritionist is your only option at this point find out their name. Go by their office and sit at their desk until they speak with you.

You need to start making things happen around there. Don't put up with the run-around. Grayson is YOUR daughter and you need a lot more answers. If you have to move hospitals to one that has drs that are more experienced and can deal with her care better, then make it happen. I asked for my son to move hospital his first week when I saw the nurses, radiologists, etc had never dealt with cf even though his drs were very experienced in dealing with cf. Changing hospitals was one of the best decisions we made. The new radiologist cleared his intestinal blockage on the first try. This new radiologist had dealt with it before he knew what needed to be done. Hope she comes home soon.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Sep 3, 2008

I am sorry about everything your daughter, you and your family are going through. Sounds like things are a bit out of control. First of all, are you at a cf center? That is important because you want drs who are familiar with cf patients and MI. You can find out by going to
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithC...tedCareCenters/
">"><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
 http://www.cff.org/LivingWithC...areCenters/
</a></a>

What type of drs are the one making the decisions about your daughter? Are they GI drs familiar with treating cf patients? My son was born with MI and his GI came by everyday and spoke to us about our son's treatment plan. We discussed each day what was the exact plan (enzymes, diet, weight gain goal, etc). A GI dr is a dr who specializes in gastroenterology. They know TONS more than nutritionists. They should know exactly why a cf baby isn't gaining weight and all of the things that can be done. Nutritionists are not drs. If a nutritionist is your only option at this point find out their name. Go by their office and sit at their desk until they speak with you.

You need to start making things happen around there. Don't put up with the run-around. Grayson is YOUR daughter and you need a lot more answers. If you have to move hospitals to one that has drs that are more experienced and can deal with her care better, then make it happen. I asked for my son to move hospital his first week when I saw the nurses, radiologists, etc had never dealt with cf even though his drs were very experienced in dealing with cf. Changing hospitals was one of the best decisions we made. The new radiologist cleared his intestinal blockage on the first try. This new radiologist had dealt with it before he knew what needed to be done. Hope she comes home soon.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Sep 3, 2008

I am sorry about everything your daughter, you and your family are going through. Sounds like things are a bit out of control. First of all, are you at a cf center? That is important because you want drs who are familiar with cf patients and MI. You can find out by going to
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithC...tedCareCenters/
">"><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
 http://www.cff.org/LivingWithC...areCenters/
</a> </a>
 
 What type of drs are the one making the decisions about your daughter? Are they GI drs familiar with treating cf patients? My son was born with MI and his GI came by everyday and spoke to us about our son's treatment plan. We discussed each day what was the exact plan (enzymes, diet, weight gain goal, etc). A GI dr is a dr who specializes in gastroenterology. They know TONS more than nutritionists. They should know exactly why a cf baby isn't gaining weight and all of the things that can be done. Nutritionists are not drs. If a nutritionist is your only option at this point find out their name. Go by their office and sit at their desk until they speak with you.
 
 You need to start making things happen around there. Don't put up with the run-around. Grayson is YOUR daughter and you need a lot more answers. If you have to move hospitals to one that has drs that are more experienced and can deal with her care better, then make it happen. I asked for my son to move hospital his first week when I saw the nurses, radiologists, etc had never dealt with cf even though his drs were very experienced in dealing with cf. Changing hospitals was one of the best decisions we made. The new radiologist cleared his intestinal blockage on the first try. This new radiologist had dealt with it before he knew what needed to be done. Hope she comes home soon.
 Sharon, mom of Sophia, 7 and Jack, 5 both with cf

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