Newborn with CF - First steps

kitomd21

New member
I agree that it will get better. You'll fall into a routine and it won't seem so overwhelming. It's strange how things just become a part of everyday life. You'll get there!

I, too, disagree in standing back and letting the CF doctors/team do their job. You must do research for yourself and be willing to question their approach if you're uncomfortable. Become as educated as possible. I speak from experience - DD always hovered around the 3-11% weight:length (CFF recommends no lower than 50% - stressing a g-tube if the patient isn't meeting this minimum) while at her first CF center. We paid privately to have her seen at another center where we found out that her enzymes were underdosed by 300%. How how is that possible?! The first clinic also wouldn't prescribe Pulmozyme or Hypertonic Saline because they weren't technically approved for a child her age. My daughter was hospitalized at two weeks old due to an exacerbation and they didn't think we should make an exception to start her on these meds?!

Fast forward four years later and she is in the 80-90% in weight and routinely takes HTS/Pulmozyme...it frightens me to think where we may be if we didn't question her care at her first CFF accredited center. You must always question and ask for explanations when you're uneasy or don't understand something. Doctors aren't infallible!
 

kitomd21

New member
I agree that it will get better. You'll fall into a routine and it won't seem so overwhelming. It's strange how things just become a part of everyday life. You'll get there!

I, too, disagree in standing back and letting the CF doctors/team do their job. You must do research for yourself and be willing to question their approach if you're uncomfortable. Become as educated as possible. I speak from experience - DD always hovered around the 3-11% weight:length (CFF recommends no lower than 50% - stressing a g-tube if the patient isn't meeting this minimum) while at her first CF center. We paid privately to have her seen at another center where we found out that her enzymes were underdosed by 300%. How how is that possible?! The first clinic also wouldn't prescribe Pulmozyme or Hypertonic Saline because they weren't technically approved for a child her age. My daughter was hospitalized at two weeks old due to an exacerbation and they didn't think we should make an exception to start her on these meds?!

Fast forward four years later and she is in the 80-90% in weight and routinely takes HTS/Pulmozyme...it frightens me to think where we may be if we didn't question her care at her first CFF accredited center. You must always question and ask for explanations when you're uneasy or don't understand something. Doctors aren't infallible!
 
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