S
scheesman
Guest
Is there anything we should do to our home like air purifiers before Lily comes home? Do we have to get heavy duty air filters for the a/c unit? Stuff like that.
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S
scheesman
Guest
Is there anything we should do to our home like air purifiers before Lily comes home? Do we have to get heavy duty air filters for the a/c unit? Stuff like that.
Every little bit helps, but I wouldn't knock myself out to get it all done right away. I think that the most important thing now is to get in touch with the cf center. Have you done that yet? I would tell them that she is planned to be discharged this week, and ask how soon you should/could make an appointment with them.
Every little bit helps, but I wouldn't knock myself out to get it all done right away. I think that the most important thing now is to get in touch with the cf center. Have you done that yet? I would tell them that she is planned to be discharged this week, and ask how soon you should/could make an appointment with them.
Every little bit helps, but I wouldn't knock myself out to get it all done right away. I think that the most important thing now is to get in touch with the cf center. Have you done that yet? I would tell them that she is planned to be discharged this week, and ask how soon you should/could make an appointment with them.
HI Shawn,
My now 8 mo old was born with an MI also, if she is still not gainign weight you should have them check for c-diff. It is a bacterial overgrowth and is very common in CF patients with MI's. My daughter had it, still does and with all the antibiotics she is on she has gotten it back.
Rebecca
My now 8 mo old was born with an MI also, if she is still not gainign weight you should have them check for c-diff. It is a bacterial overgrowth and is very common in CF patients with MI's. My daughter had it, still does and with all the antibiotics she is on she has gotten it back.
Rebecca
HI Shawn,
My now 8 mo old was born with an MI also, if she is still not gainign weight you should have them check for c-diff. It is a bacterial overgrowth and is very common in CF patients with MI's. My daughter had it, still does and with all the antibiotics she is on she has gotten it back.
Rebecca
My now 8 mo old was born with an MI also, if she is still not gainign weight you should have them check for c-diff. It is a bacterial overgrowth and is very common in CF patients with MI's. My daughter had it, still does and with all the antibiotics she is on she has gotten it back.
Rebecca
HI Shawn,
My now 8 mo old was born with an MI also, if she is still not gainign weight you should have them check for c-diff. It is a bacterial overgrowth and is very common in CF patients with MI's. My daughter had it, still does and with all the antibiotics she is on she has gotten it back.
Rebecca
My now 8 mo old was born with an MI also, if she is still not gainign weight you should have them check for c-diff. It is a bacterial overgrowth and is very common in CF patients with MI's. My daughter had it, still does and with all the antibiotics she is on she has gotten it back.
Rebecca
S
scheesman
Guest
We actually have an appointment tomorrow sometime before she gets dishcarged. We tried to clean the house realy well today and got knew filters. Lily is realy struggling with her weight right now. She just lost another 2 oz today, that puts her at 9lb-15oz. Her all time high was 10lb-7oz. That was after her last surgery on Feb. 1st. We think that because she just came off the tpn a week ago that may have something to do with the weight loss. Does that seem realistic to you guys? We hope it doesn't stop her from going home tomorrow. She was on antibiotics for a long time.
Thank you guys for the help, we realy need feedback at this point. If you have any info you just want to add, my ears are open to anything that will help Lily and us to get through this.
Thank you guys for the help, we realy need feedback at this point. If you have any info you just want to add, my ears are open to anything that will help Lily and us to get through this.
S
scheesman
Guest
We actually have an appointment tomorrow sometime before she gets dishcarged. We tried to clean the house realy well today and got knew filters. Lily is realy struggling with her weight right now. She just lost another 2 oz today, that puts her at 9lb-15oz. Her all time high was 10lb-7oz. That was after her last surgery on Feb. 1st. We think that because she just came off the tpn a week ago that may have something to do with the weight loss. Does that seem realistic to you guys? We hope it doesn't stop her from going home tomorrow. She was on antibiotics for a long time.
Thank you guys for the help, we realy need feedback at this point. If you have any info you just want to add, my ears are open to anything that will help Lily and us to get through this.
Thank you guys for the help, we realy need feedback at this point. If you have any info you just want to add, my ears are open to anything that will help Lily and us to get through this.
S
scheesman
Guest
We actually have an appointment tomorrow sometime before she gets dishcarged. We tried to clean the house realy well today and got knew filters. Lily is realy struggling with her weight right now. She just lost another 2 oz today, that puts her at 9lb-15oz. Her all time high was 10lb-7oz. That was after her last surgery on Feb. 1st. We think that because she just came off the tpn a week ago that may have something to do with the weight loss. Does that seem realistic to you guys? We hope it doesn't stop her from going home tomorrow. She was on antibiotics for a long time.
Thank you guys for the help, we realy need feedback at this point. If you have any info you just want to add, my ears are open to anything that will help Lily and us to get through this.
Thank you guys for the help, we realy need feedback at this point. If you have any info you just want to add, my ears are open to anything that will help Lily and us to get through this.
When I was born, I was in the hospital for a few weeks as they tried to get me to gain weight. I actually LOST weight over those few weeks, and gained rather rapidly when I was sent home. Not saying that this will be the case with your little girl but just a personal experience.
When I was born, I was in the hospital for a few weeks as they tried to get me to gain weight. I actually LOST weight over those few weeks, and gained rather rapidly when I was sent home. Not saying that this will be the case with your little girl but just a personal experience.
When I was born, I was in the hospital for a few weeks as they tried to get me to gain weight. I actually LOST weight over those few weeks, and gained rather rapidly when I was sent home. Not saying that this will be the case with your little girl but just a personal experience.
froggymama
New member
Shawn, We know what you're going through. The first couple months are the hardest, learning everything, adjusting to medications, and treatments. But you'll get through it and life will return to normal (not the normal you're used to, but still a normal daily life.) My daughter had a hard time taking enzymes. She was only 4 months when she was diagnosed and not thriving. We spent 3 weeks in the hospital while she gained weight. The only way my baby was able to gain weight was with the pancreatic enzymes. She had been losing oz. everyday, but the day she was given Creon (a pancreatic enzyme), her weight started to pack on. Although it was difficult to get them down, it was necessary for her weight gain. Because she could not swallow applesauce, we used a very large syringe and sucked up the enzymes from a cup (with some Pedialyte in it) and then slowly squirted the enzymes and pedialyte in her mouth. I have a couple questions about the fact that your doctors don't seem concerned about CF and that they gave up after Lily threw up the enzymes the first time. For most kids with CF, they need the enzymes to digest food. Without it, they won't gain weight, or breakdown the nutrients from the food. Are you seeing a Pulmonologist? And are you at a hospital where they have a CF Certified Clinic? I don't want to overstep my bounds, but its concerning that the doctors don't seem very familiar with CF. I would contact the Cystic Fibrosis Foundation for a CF Certified Clinic in your area. They will have the tools and expertise to assess your baby's situation, and can help with weight gain, pancreatic enzymes and of course, the daily maintenance of respiratory care. I will pray for you and your daughter and send good healing thoughts your way.
froggymama
New member
Shawn, We know what you're going through. The first couple months are the hardest, learning everything, adjusting to medications, and treatments. But you'll get through it and life will return to normal (not the normal you're used to, but still a normal daily life.) My daughter had a hard time taking enzymes. She was only 4 months when she was diagnosed and not thriving. We spent 3 weeks in the hospital while she gained weight. The only way my baby was able to gain weight was with the pancreatic enzymes. She had been losing oz. everyday, but the day she was given Creon (a pancreatic enzyme), her weight started to pack on. Although it was difficult to get them down, it was necessary for her weight gain. Because she could not swallow applesauce, we used a very large syringe and sucked up the enzymes from a cup (with some Pedialyte in it) and then slowly squirted the enzymes and pedialyte in her mouth. I have a couple questions about the fact that your doctors don't seem concerned about CF and that they gave up after Lily threw up the enzymes the first time. For most kids with CF, they need the enzymes to digest food. Without it, they won't gain weight, or breakdown the nutrients from the food. Are you seeing a Pulmonologist? And are you at a hospital where they have a CF Certified Clinic? I don't want to overstep my bounds, but its concerning that the doctors don't seem very familiar with CF. I would contact the Cystic Fibrosis Foundation for a CF Certified Clinic in your area. They will have the tools and expertise to assess your baby's situation, and can help with weight gain, pancreatic enzymes and of course, the daily maintenance of respiratory care. I will pray for you and your daughter and send good healing thoughts your way.
froggymama
New member
Shawn, We know what you're going through. The first couple months are the hardest, learning everything, adjusting to medications, and treatments. But you'll get through it and life will return to normal (not the normal you're used to, but still a normal daily life.) My daughter had a hard time taking enzymes. She was only 4 months when she was diagnosed and not thriving. We spent 3 weeks in the hospital while she gained weight. The only way my baby was able to gain weight was with the pancreatic enzymes. She had been losing oz. everyday, but the day she was given Creon (a pancreatic enzyme), her weight started to pack on. Although it was difficult to get them down, it was necessary for her weight gain. Because she could not swallow applesauce, we used a very large syringe and sucked up the enzymes from a cup (with some Pedialyte in it) and then slowly squirted the enzymes and pedialyte in her mouth. I have a couple questions about the fact that your doctors don't seem concerned about CF and that they gave up after Lily threw up the enzymes the first time. For most kids with CF, they need the enzymes to digest food. Without it, they won't gain weight, or breakdown the nutrients from the food. Are you seeing a Pulmonologist? And are you at a hospital where they have a CF Certified Clinic? I don't want to overstep my bounds, but its concerning that the doctors don't seem very familiar with CF. I would contact the Cystic Fibrosis Foundation for a CF Certified Clinic in your area. They will have the tools and expertise to assess your baby's situation, and can help with weight gain, pancreatic enzymes and of course, the daily maintenance of respiratory care. I will pray for you and your daughter and send good healing thoughts your way.
S
scheesman
Guest
Lily is on enzymes now. They put her back on them about a week ago. She takes them down her g-tube ( a tube that goes straight to her tummy) I don't know if you know what it is. She has had no reactions to them this time.
As far as the cf center goes ( witch is next door to the hospital ). We went over there the other day and they wouldn't give us any info because ther are no doc orders and she is still in the hospital. The doc finaly called them and they are suppose to come see us today. So hopefully they get us on track.
As far as the cf center goes ( witch is next door to the hospital ). We went over there the other day and they wouldn't give us any info because ther are no doc orders and she is still in the hospital. The doc finaly called them and they are suppose to come see us today. So hopefully they get us on track.
S
scheesman
Guest
Lily is on enzymes now. They put her back on them about a week ago. She takes them down her g-tube ( a tube that goes straight to her tummy) I don't know if you know what it is. She has had no reactions to them this time.
As far as the cf center goes ( witch is next door to the hospital ). We went over there the other day and they wouldn't give us any info because ther are no doc orders and she is still in the hospital. The doc finaly called them and they are suppose to come see us today. So hopefully they get us on track.
As far as the cf center goes ( witch is next door to the hospital ). We went over there the other day and they wouldn't give us any info because ther are no doc orders and she is still in the hospital. The doc finaly called them and they are suppose to come see us today. So hopefully they get us on track.
S
scheesman
Guest
Lily is on enzymes now. They put her back on them about a week ago. She takes them down her g-tube ( a tube that goes straight to her tummy) I don't know if you know what it is. She has had no reactions to them this time.
As far as the cf center goes ( witch is next door to the hospital ). We went over there the other day and they wouldn't give us any info because ther are no doc orders and she is still in the hospital. The doc finaly called them and they are suppose to come see us today. So hopefully they get us on track.
As far as the cf center goes ( witch is next door to the hospital ). We went over there the other day and they wouldn't give us any info because ther are no doc orders and she is still in the hospital. The doc finaly called them and they are suppose to come see us today. So hopefully they get us on track.