[VENT-L] Need Vent Users Input

[TByrne1221]

I joined the list a few months back and apologize for lurking and not introducing myself sooner.  Some of you may know us from the trachties list.  My son BJ is 7 and is on the vent when sleeping and during the day if he is sick or very tired.    We have recently switched from an LP10 vent to a Newport HT50 and from volume ventilation to pressure ventilation.  A few months ago we started using a Bivona TTS trach because he has a significant leak and needs the smaller diameter during the day so he can wear his PMV.  I'm quite sure all these changes feel very different for him and he has been quite the little trooper.    BJ is not good at communicating pain or discomfort so I'm hoping you adults can help me understand what he might be feeling.  We inflate his trach with 2� cc of saline and I know he does not like that.  He will not talk with it inflated and always needs to be suctioned a few times after we inflate.  He has been a bit sick on and off needing nebs and several times after inflating the trach he has developed significant nasal congestion which has me totally baffled.   Any input from all you experts would be appreciated.   Terese - single mom to 27 week surviving quadruplets - 7 years old now! "BJ" (spina bifida, ACM, VP shunt, trach, ventilator (when sleeping), seizure disorder, paralyzed vocal cord, G-tube and a lot more, but most importantly, a bright and happy little boy!) "Caytie" (reflux, hiatal hernia, asthma/RAD, oral motor issues and an adorable, sensitive, compassionate little girl!)