Tracheotomy and Malacia

[BLKC032209]

Our son was diagnosed at 9 days old with CF and now has spent 45 days of the first 11 weeks of his life at the hospital. He was born with meconium ileus and made it thru the operation for that, but now his CF mucus build up combined with
his trachea malacia is so severe he can barely breath and has been hooked to a ventilator for the last week. The Doctors believe they want to do a tracheotomy this week, allow him 2-3 weeks to recover, and send him home with the use of a home ventilator. Does anyone have any insight on a situation such as this? Any info would be welcomed. Thank you.

 

[triples15]

I'm so sorry, I have no insight to offer. I just wanted to say that I'm so sorry to hear you and your little guy are going through this! I hope you can find help and support here. Hang in there momma, and keep us posted!

Take Care,

Autumn 32 w/cf

 

[BLKC032209]

Three weeks later and after heavy "trach" training and ventilator training, our son is adjusting fairly good to life with
a trach. Our hospital tells us that they have "never" had a CF baby with a trach before so it is a first for the staff there,
as well as us. And it complicates things a bit because the "CF Clinic Team" isn't always on the same page as the "Ventilator
Clinic Team." Anyway, surely there is someone out there in CF land that had or has a trach as well.... can you please give
us any advice/pointers ect....?? Thank you.