Hi everyone.. I been lurking off and on for a while. So I will reintrouduce myself and reason for being here.
I am Cynthia, have 3kids... the youngest,Joshua is 34 months old. premmie,2lbs and 11ozs.. (29weeker). He was born with ASD/VSD(holes in heart) and Down Syndrome. He was only on the vent one day and CPAP for 4 days.. till he was 12 weeks old and went on the vent for a month and had open heart surgery. He then had a fundo(reflux surgery) and g-tube placed. Time went on and he had went in for a simple circumsison and hypospadius repair. On the way home he ended up not breathing and found out at that point he has grade 2 subglottic stensions. We have dealt with it over a year... and with all the steriods, I think has stunt his growth.
He is finally hit 23lbs and 30inches...
We did well till Mid Jan and got sick.. brochitis and ect.. lead to one thing after another.. the last 2 weeks we gained from 20lbs to 23lbs and stridor is louder..and more pronouce. We was hoping and praying this was not going to be the case.
We went to the ENT today for a follow up.. had 3 choices.. 1)let nature takes it course 2)trach him 3)Do the LTP....
Of course.. I don't want anything.. I want it all to go away.. but for him.. I am looking at LTP.. hopfully FIX it all for once in all!
I guess I am looking for some tips and advice..
If I do go ahead with LTP, we will wait till Aug/Sept.. Cuz I have 2 other kids at home and school time better for me with them.
Last year we went to Dr.Rutter and had T&A and ulva done.. depending on insurance we can get back for LTP.
Congrts to those decannulated and Best wishes to those who been there done that!!!
Birthday wishes to you all... rather it early or belated..