I haven't got to bring my baby home yet.

[Tcole]

Grayson was born May 18th 2008. Just hours after delivery she was transfered to another hospital because of bowel issues. The doctors decided that they needed to do surgery because her bowel was twisted. So now Grayson has two parts of her bowel on the outside of her body. One part has a colostomy bag and the other part has a continuous feed of predigested formula. She seemed to be doing as expected until they moved her to another floor in the hospital that was less critical. Just days after her move she developed a cough. Her bowel and throat cultured MRSA. She also had severe "bradys" and pnemonia. The doctors called in the middle of the night telling me they need to give Grayson oxygen, and blood transfusion, running more tests, and they decided to send her back to the NICU. So we are back in the NICU and they seem to not know why she's coughing so much. Her lung xray seems normal. All lab work is coming back negative for bacteria. They decided to put her in isolation category 3. which means we have to wear gowns, gloves, and mask prior to entering her room. She does albuteral and chest PT every 4 hrs. She just got put on another neb medication and a steroid. She's still on oxygen and 4 different antibiotics. The doctors said they might do the second bowel surgery in another 3-4 more weeks. I am so helpless right now. My heart hurts so much for my baby girl. She looks at me with her big blue eyes as saying help me mommy. Has anyone been through this? What was your outcome?

I am sure i forgot some things.

 

[Tcole]

Grayson was born May 18th 2008. Just hours after delivery she was transfered to another hospital because of bowel issues. The doctors decided that they needed to do surgery because her bowel was twisted. So now Grayson has two parts of her bowel on the outside of her body. One part has a colostomy bag and the other part has a continuous feed of predigested formula. She seemed to be doing as expected until they moved her to another floor in the hospital that was less critical. Just days after her move she developed a cough. Her bowel and throat cultured MRSA. She also had severe "bradys" and pnemonia. The doctors called in the middle of the night telling me they need to give Grayson oxygen, and blood transfusion, running more tests, and they decided to send her back to the NICU. So we are back in the NICU and they seem to not know why she's coughing so much. Her lung xray seems normal. All lab work is coming back negative for bacteria. They decided to put her in isolation category 3. which means we have to wear gowns, gloves, and mask prior to entering her room. She does albuteral and chest PT every 4 hrs. She just got put on another neb medication and a steroid. She's still on oxygen and 4 different antibiotics. The doctors said they might do the second bowel surgery in another 3-4 more weeks. I am so helpless right now. My heart hurts so much for my baby girl. She looks at me with her big blue eyes as saying help me mommy. Has anyone been through this? What was your outcome?

I am sure i forgot some things.

 

[Tcole]

Grayson was born May 18th 2008. Just hours after delivery she was transfered to another hospital because of bowel issues. The doctors decided that they needed to do surgery because her bowel was twisted. So now Grayson has two parts of her bowel on the outside of her body. One part has a colostomy bag and the other part has a continuous feed of predigested formula. She seemed to be doing as expected until they moved her to another floor in the hospital that was less critical. Just days after her move she developed a cough. Her bowel and throat cultured MRSA. She also had severe "bradys" and pnemonia. The doctors called in the middle of the night telling me they need to give Grayson oxygen, and blood transfusion, running more tests, and they decided to send her back to the NICU. So we are back in the NICU and they seem to not know why she's coughing so much. Her lung xray seems normal. All lab work is coming back negative for bacteria. They decided to put her in isolation category 3. which means we have to wear gowns, gloves, and mask prior to entering her room. She does albuteral and chest PT every 4 hrs. She just got put on another neb medication and a steroid. She's still on oxygen and 4 different antibiotics. The doctors said they might do the second bowel surgery in another 3-4 more weeks. I am so helpless right now. My heart hurts so much for my baby girl. She looks at me with her big blue eyes as saying help me mommy. Has anyone been through this? What was your outcome?

I am sure i forgot some things.

 

[Tcole]

Grayson was born May 18th 2008. Just hours after delivery she was transfered to another hospital because of bowel issues. The doctors decided that they needed to do surgery because her bowel was twisted. So now Grayson has two parts of her bowel on the outside of her body. One part has a colostomy bag and the other part has a continuous feed of predigested formula. She seemed to be doing as expected until they moved her to another floor in the hospital that was less critical. Just days after her move she developed a cough. Her bowel and throat cultured MRSA. She also had severe "bradys" and pnemonia. The doctors called in the middle of the night telling me they need to give Grayson oxygen, and blood transfusion, running more tests, and they decided to send her back to the NICU. So we are back in the NICU and they seem to not know why she's coughing so much. Her lung xray seems normal. All lab work is coming back negative for bacteria. They decided to put her in isolation category 3. which means we have to wear gowns, gloves, and mask prior to entering her room. She does albuteral and chest PT every 4 hrs. She just got put on another neb medication and a steroid. She's still on oxygen and 4 different antibiotics. The doctors said they might do the second bowel surgery in another 3-4 more weeks. I am so helpless right now. My heart hurts so much for my baby girl. She looks at me with her big blue eyes as saying help me mommy. Has anyone been through this? What was your outcome?

I am sure i forgot some things.

 

[Tcole]

Grayson was born May 18th 2008. Just hours after delivery she was transfered to another hospital because of bowel issues. The doctors decided that they needed to do surgery because her bowel was twisted. So now Grayson has two parts of her bowel on the outside of her body. One part has a colostomy bag and the other part has a continuous feed of predigested formula. She seemed to be doing as expected until they moved her to another floor in the hospital that was less critical. Just days after her move she developed a cough. Her bowel and throat cultured MRSA. She also had severe "bradys" and pnemonia. The doctors called in the middle of the night telling me they need to give Grayson oxygen, and blood transfusion, running more tests, and they decided to send her back to the NICU. So we are back in the NICU and they seem to not know why she's coughing so much. Her lung xray seems normal. All lab work is coming back negative for bacteria. They decided to put her in isolation category 3. which means we have to wear gowns, gloves, and mask prior to entering her room. She does albuteral and chest PT every 4 hrs. She just got put on another neb medication and a steroid. She's still on oxygen and 4 different antibiotics. The doctors said they might do the second bowel surgery in another 3-4 more weeks. I am so helpless right now. My heart hurts so much for my baby girl. She looks at me with her big blue eyes as saying help me mommy. Has anyone been through this? What was your outcome?
<br />
<br />I am sure i forgot some things.

 

[SARAHSARAH253]

I posted Our Story under the Diagnosis Forum....My son did 40 days in the NICU...However, we didn't have any other health issues other than the same thing your daughter has with his bowels being seperated...It seemed like forever for them to heal...But, we finally got to take him home after....2 Hospitals....and finding out he had CF. My heart goes out to you...Sending you all my love and prayers..

Sarah

Mommy to Johnny 10 months "yeeterday" w/CF

 

[SARAHSARAH253]

I posted Our Story under the Diagnosis Forum....My son did 40 days in the NICU...However, we didn't have any other health issues other than the same thing your daughter has with his bowels being seperated...It seemed like forever for them to heal...But, we finally got to take him home after....2 Hospitals....and finding out he had CF. My heart goes out to you...Sending you all my love and prayers..

Sarah

Mommy to Johnny 10 months "yeeterday" w/CF

 

[SARAHSARAH253]

I posted Our Story under the Diagnosis Forum....My son did 40 days in the NICU...However, we didn't have any other health issues other than the same thing your daughter has with his bowels being seperated...It seemed like forever for them to heal...But, we finally got to take him home after....2 Hospitals....and finding out he had CF. My heart goes out to you...Sending you all my love and prayers..

Sarah

Mommy to Johnny 10 months "yeeterday" w/CF

 

[SARAHSARAH253]

I posted Our Story under the Diagnosis Forum....My son did 40 days in the NICU...However, we didn't have any other health issues other than the same thing your daughter has with his bowels being seperated...It seemed like forever for them to heal...But, we finally got to take him home after....2 Hospitals....and finding out he had CF. My heart goes out to you...Sending you all my love and prayers..

Sarah

Mommy to Johnny 10 months "yeeterday" w/CF

 

[SARAHSARAH253]

I posted Our Story under the Diagnosis Forum....My son did 40 days in the NICU...However, we didn't have any other health issues other than the same thing your daughter has with his bowels being seperated...It seemed like forever for them to heal...But, we finally got to take him home after....2 Hospitals....and finding out he had CF. My heart goes out to you...Sending you all my love and prayers..
<br />
<br />Sarah
<br />
<br />Mommy to Johnny 10 months "yeeterday" w/CF

 

[Nicole]

Your story sounds a lot like ours. I know how hard and frustrating it can be to keep waiting day after day for your little one to come home. Our son was in the hospital for 49 days before he got to come home and even then he had a PICC and was on tpn and antibiotics. He had to go back at about 3.5 months to have his ostomy reversed. Just to fast forward and give you some hope, we now have an very active 4 year old little boy who is doing very well. He weighs 45 pounds and he hasn't had any real issues with his lungs. We do and always have done two CPT treatments/vest per day and of course he is on quite a few meds. But aside from all that he is just a normal preschooler, driving us insane at times! Please feel free to pm me if you have any specific questions.

 

[Nicole]

Your story sounds a lot like ours. I know how hard and frustrating it can be to keep waiting day after day for your little one to come home. Our son was in the hospital for 49 days before he got to come home and even then he had a PICC and was on tpn and antibiotics. He had to go back at about 3.5 months to have his ostomy reversed. Just to fast forward and give you some hope, we now have an very active 4 year old little boy who is doing very well. He weighs 45 pounds and he hasn't had any real issues with his lungs. We do and always have done two CPT treatments/vest per day and of course he is on quite a few meds. But aside from all that he is just a normal preschooler, driving us insane at times! Please feel free to pm me if you have any specific questions.

 

[Nicole]

Your story sounds a lot like ours. I know how hard and frustrating it can be to keep waiting day after day for your little one to come home. Our son was in the hospital for 49 days before he got to come home and even then he had a PICC and was on tpn and antibiotics. He had to go back at about 3.5 months to have his ostomy reversed. Just to fast forward and give you some hope, we now have an very active 4 year old little boy who is doing very well. He weighs 45 pounds and he hasn't had any real issues with his lungs. We do and always have done two CPT treatments/vest per day and of course he is on quite a few meds. But aside from all that he is just a normal preschooler, driving us insane at times! Please feel free to pm me if you have any specific questions.

 

[Nicole]

Your story sounds a lot like ours. I know how hard and frustrating it can be to keep waiting day after day for your little one to come home. Our son was in the hospital for 49 days before he got to come home and even then he had a PICC and was on tpn and antibiotics. He had to go back at about 3.5 months to have his ostomy reversed. Just to fast forward and give you some hope, we now have an very active 4 year old little boy who is doing very well. He weighs 45 pounds and he hasn't had any real issues with his lungs. We do and always have done two CPT treatments/vest per day and of course he is on quite a few meds. But aside from all that he is just a normal preschooler, driving us insane at times! Please feel free to pm me if you have any specific questions.

 

[Nicole]

Your story sounds a lot like ours. I know how hard and frustrating it can be to keep waiting day after day for your little one to come home. Our son was in the hospital for 49 days before he got to come home and even then he had a PICC and was on tpn and antibiotics. He had to go back at about 3.5 months to have his ostomy reversed. Just to fast forward and give you some hope, we now have an very active 4 year old little boy who is doing very well. He weighs 45 pounds and he hasn't had any real issues with his lungs. We do and always have done two CPT treatments/vest per day and of course he is on quite a few meds. But aside from all that he is just a normal preschooler, driving us insane at times! Please feel free to pm me if you have any specific questions.

 

[Ratatosk]

Is she being seen by a CF Team or CF doctor at this time? Normal doctors don't always know what to listen for. Or it might be time to ask for an infectious disease consult to find out exactly what she's culturing. I've been burned in the past being told DS'lungs are clear or his cough is normal, only to be told by the CF doctor that he needs antibiotics and to increase CPT, because he has bronchitis or an upper respiratory infection.

DS spent 4 weeks in the NICU recovering from his surgery --the were able to repair the damage and he didn't need a colostomy or illeostomy but he kept getting infections and needed IV antibiotics; however, they also had the respiratory therapy department come in every 4-6 hours to do chest physiotherapy and nebs. They started doing that when he was just a few days old. There was talk of doing giving him blood because they kept taking so much blood to test it that he was becoming anemic. The held off doing blood cultures for a few days.

 

[Ratatosk]

Is she being seen by a CF Team or CF doctor at this time? Normal doctors don't always know what to listen for. Or it might be time to ask for an infectious disease consult to find out exactly what she's culturing. I've been burned in the past being told DS'lungs are clear or his cough is normal, only to be told by the CF doctor that he needs antibiotics and to increase CPT, because he has bronchitis or an upper respiratory infection.

DS spent 4 weeks in the NICU recovering from his surgery --the were able to repair the damage and he didn't need a colostomy or illeostomy but he kept getting infections and needed IV antibiotics; however, they also had the respiratory therapy department come in every 4-6 hours to do chest physiotherapy and nebs. They started doing that when he was just a few days old. There was talk of doing giving him blood because they kept taking so much blood to test it that he was becoming anemic. The held off doing blood cultures for a few days.

 

[Ratatosk]

Is she being seen by a CF Team or CF doctor at this time? Normal doctors don't always know what to listen for. Or it might be time to ask for an infectious disease consult to find out exactly what she's culturing. I've been burned in the past being told DS'lungs are clear or his cough is normal, only to be told by the CF doctor that he needs antibiotics and to increase CPT, because he has bronchitis or an upper respiratory infection.

DS spent 4 weeks in the NICU recovering from his surgery --the were able to repair the damage and he didn't need a colostomy or illeostomy but he kept getting infections and needed IV antibiotics; however, they also had the respiratory therapy department come in every 4-6 hours to do chest physiotherapy and nebs. They started doing that when he was just a few days old. There was talk of doing giving him blood because they kept taking so much blood to test it that he was becoming anemic. The held off doing blood cultures for a few days.

 

[Ratatosk]

Is she being seen by a CF Team or CF doctor at this time? Normal doctors don't always know what to listen for. Or it might be time to ask for an infectious disease consult to find out exactly what she's culturing. I've been burned in the past being told DS'lungs are clear or his cough is normal, only to be told by the CF doctor that he needs antibiotics and to increase CPT, because he has bronchitis or an upper respiratory infection.

DS spent 4 weeks in the NICU recovering from his surgery --the were able to repair the damage and he didn't need a colostomy or illeostomy but he kept getting infections and needed IV antibiotics; however, they also had the respiratory therapy department come in every 4-6 hours to do chest physiotherapy and nebs. They started doing that when he was just a few days old. There was talk of doing giving him blood because they kept taking so much blood to test it that he was becoming anemic. The held off doing blood cultures for a few days.

 

[Ratatosk]

Is she being seen by a CF Team or CF doctor at this time? Normal doctors don't always know what to listen for. Or it might be time to ask for an infectious disease consult to find out exactly what she's culturing. I've been burned in the past being told DS'lungs are clear or his cough is normal, only to be told by the CF doctor that he needs antibiotics and to increase CPT, because he has bronchitis or an upper respiratory infection.
<br />
<br />DS spent 4 weeks in the NICU recovering from his surgery --the were able to repair the damage and he didn't need a colostomy or illeostomy but he kept getting infections and needed IV antibiotics; however, they also had the respiratory therapy department come in every 4-6 hours to do chest physiotherapy and nebs. They started doing that when he was just a few days old. There was talk of doing giving him blood because they kept taking so much blood to test it that he was becoming anemic. The held off doing blood cultures for a few days.