There are a few different attachments used for the end of the trach tube. In this photo she is wearing a (purple) Passy Muir Valve which lets her breathe in through the trach but not out and allows her to make noise and have a voice. Without the PMV, she cannot make any noise. The other attachment we use is an HME or humidivent which protects the opening of the tube and provides moisture, and we have an attachment to give her oxygen when needed.
She must be suctioned fairly frequently throughout the day in order to keep her airway and lungs clear. At night when she goes on the vent, the circuit attaches directly to her trach tube. Technically she is "always intubated". For someone without a trach, this happens via the mouth in emergency situations. People who need long term support for their airway and lungs receive a trach.
Wherever we go, we must always have a backup (emergency) trach of the same size and one smaller in case it needs to be changed quickly. We must also carry our portable suction machine, suction catheters, saline bullets, oxygen and a pulse ox monitor.
Although Ella's airway has gotten larger and improved over time, her lungs are weak and do not have much reserve so she will always need to be on the ventilator for C-PAP/pressure support at night. She may need additional support (a breath rate) when she becomes very ill. In addition, she would likely still be a difficult intubation in an emergency situation, so she will always have the trach. There are many people who only have them temporarily, but for Ella it will be part of her for life!
I bet Ella is so sweet. My son has all of the same equipment! Even a PMV, the purple one!! We're very thankful that our son can use his speaking valve. And was so relieved when he got used to it! So glad your daughter can use hers! I bet it's so wonderful hearing her voice!
ReplyDelete