My son is vent dependent - he never has the cuff up - always down even when he sleeps. This has been fine for 5 years now. Suddenly he is now waking up gasping for air, and I think it's because he sleeps with his mouth wide open so all of the vent breath is going out his mouth. He refuses to put anything in his cuff because he wants to have his voice at all times. Now I have to bag him in the morning because he is air starved. Also since this has been happening, he has been sleeping constantly. I can barely wake him up to eat. He sleeps all day, all night. Any ideas? We have an appointment with Pulmonary/Resp next week.
Thanks
Sharon, mom of Chris

Sharon,
It sounds like you know the answer to this one already, but your son doesn't want to comply. I understand why he doesn't want to give up voicing. Here is my suggestion, based on what you have said the answer looks like he may need to sleep with his cuff inflated. The best answer may be inflating his cuff just to the level where he gets a partial seal. This takes some trials, and he needs to give feed back, but if you give him a "partially" inflated cuff, he will be able to vocalize at peak pressure if he has to, though maybe not as well as with the cuff down, he should be able to some. This should give him better rest, and leave him able to voice some if needed. It is best to take this up at the Pulmonary appointment as an adjustment of the vent settings might be called for when the cuff is inflated, or they, knowing his case might have a different answer for him. I hope this is helpful. Good luck.

You are right - I know he really should inflate the cuff at night. I am going to talk with the doctor about this anyway. I wish he would just put like 3cc in the cuff. He's so stubborn. (he's 18) You did help me, you reinforced my own thoughts about this. Thanks

Sharon, You need to learn why your sons ability to control an uncuffed (or deflated cuffed) trach has diminished. The inability to control his epiglottal closing pressure also seems to impact him during the day and this can also contribute to aspiration problems as well. There are some modifications that can be made to the ventilator if they also achieve adequate ventilation and oxygenation. You can put a pressure limit valve in-line in order to keep the maximum circuit pressures more manageable. You may also look to change the peak flow delivered by the ventilator to lower peak pressures in the circuit. You may determine a different group of ventilator settings for nighttime VS daytime usage ideally set for those purposes. All of these changes will alter the existing minute ventilation and must be verified safe before using.

It is also possible that his tracheal lining dynamics have changed with growth and/or long term trach placement. He may do better with a larger trach tube, a longer trach tube or with specific tube placement adjustment (I:E, securing the tube to the right of left more prominently). These can be assessed by an ENT doc with a simple endoscopy procedure. He may, as you note, require cuff inflation full or part time. If he can still vocalize well there are trach products that will allow the tube to be cuffed/inflated and also provide a bias gas flow used for speech empowerment. Keep in mind that intra-cuff pressures must be monitored and kept low enough to not impair blood flow to the tissues lining the tracheal wall.

Best to you and your son.

I am on CPAP with a deflated cuff and an inline Passy-Muir Valve during the day. At night, however, my cuff must be inflated and I switch the vent settings to SIMV (BPM: 14 and Pressure Support 20). I can understand his opposition to an inflated cuff. I am not crazy about loosing my ability to yell in case something happens. To get around that, my parents and I use two devices: a baby monitor and a wireless doorbell. We use the baby monitor so my parents can hear the alarms or any unusual vent noises. If I need something and none of the emergency alarms are sounding, I ring the wireless doorbell.

You can get a wireless doorbell from RadioShack. The button looks like a little garage door remote. You can put the chime box wherever you would need it to be able to hear your son.