Posted by Jenn
on 11/19/2008, 7:33 pm, in reply to "Distraction surgery"
70.108.125.59
Lori - I feel for you and understand how confusing this all is. You are supposed to be home snuggling with your precious newborn but instead you are talking to doctors all day long and being told to research medical stuff. The best thing you can do is talk to others on this site and do as much research as possible AND get second opinions. My daughter is 4-1/2 months so all of this is very fresh in my mind. I have done so much research and spent so much time talking to other PRS parents. First, every case is different so you always have to remember that when getting any advise. Having said that, let me share with you what I've learned. Hospitals all over the country have different knowledge levels of PRS and some are quick to trach or distract. Our surgeon is highly against distracting and said he would never do it even on his own child. The chin will grow back so for now there has to be another way. You may also deal with major dental issues down the road, according to our surgeon. We used a very large feeding tube through the nose that held the tongue in place. Our doctors in the NICU experimented with this after they realized our daughter was breathing much better with a regular feeding tube in. They do this in London and it works until the child's airway grows and chin grows. Our daughter came home at 3 weeks with this tube in her nose and it stayed for about 2 months. Her chin is growing, her airway is larger and her tongue is stronger now so she can control it.
That was our experience and while it is a bit unusual it worked and we are so happy we didn't have any invasive surgery. At 4-1/2 months her breathing issues are all resolved although we still keep her on a monitor at night. We use the Haberman bottle which was slow going at first but is great now. I also think that our constant efforts to get her to feed orally from the Haberman made her use her mouth more and made her tongue stronger.
Please contact me anytime of the day if you ever want to talk or just need a shoulder to cry on or want some advise.
--Previous Message--
: My son was just diagnosed with PRS. He is
: three weeks old and was born six weeks
: premature. His doctor is scheduling
: distraction surgery for Friday to open his
: airway and help with his feeding issues.
: Any advice on what to expect after the
: surgery? We are just starting to gather
: information on PRS and distraction. Any
: personal experiences you are willing to
: share would be much appreciated!
:
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