Hi Terese,
It is good to hear from you! BJ IS quire the little trooper. He has come so far.
I also use the Bivona TTS. I use it only at night when I am on the ventilator. During the day I use a Shiley cuffless. It is easier in the day to have in inner cannula that I can clean to keep my airway open. I use ~3cc water in the Bivona cuff. With the cuff inflated you cannot talk as no air can pass over the vocal cords. I measure the amount of water needed in the cuff by talking. When I cannot talk anymore, I know there is enough water in the cuff to make a seal. Too much water can cause pressure sores. It makes the trachea feel like a sore throat.
I think the reason BJ needs suctioning and has nasal congestion with the cuff inflated is just a matter of airway dynamics. The cuff may dislodge some secretions, but also changes the air pressures in the trachea and nose and mobilizes or blocks secretions.
I pray that he gets well and stays well, Margaret
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.
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