Friday at the Gimp Compound or Dizzying up the Girl

So, about ten days ago, my trach's cuff burst. In my throat, in the middle of the night. And just for fun, this happened when I was just coming down with a virus of some sort and happened to be sitting on the toilet. I was with a new nurse -- new to me and new to the profession, so she'd never seen a trach switch before. And my Mom had never done one, but we woke her up for the opportunity. Dad was there too -- it was an exciting event for us all.

But it went very well. When I'd last had a scheduled Parts Replacement Event, I'd asked the doctor to show both my mother and the nurse present how to do it. We were mostly prepared. We only lacked sterile lubrication to make it easy to slide the new one in. But in the excitement, we didn't pay the usual attention to the exact amount of water to fill my cuff comfortably with.* And we didn't adjust the strap around my neck just right -- because I have a scrawny neck, the trach can be shoved in too far so that it curves against the back wall of my windpipe and the opening is curved up against the front of my windpipe, which both hurts and impedes delivery of air.

What with the virus and this trach switch requiring fine-tuning for optimum breathing and comfort, I've been pretty dizzy the last ten days. Oh, and I've just finished weaning off the Effexor Dr. Perky placed me on in rehab, so that might be contributing to my dizziness too.

I've got an appointment for a blood gas** next week and I've spent part of today with the cuff filled beyond speaking-capability in order to better approximate the exact settings I used in the hospital, which is when I was last monitored by RTs and a pulmonologist. I've been the vent expert in my life since I came home with the machine last March.*** Ironically, state-paid home health care for a vent user requires hired nurses, but nurses are not trained in the specialty of vent management unless they get special training to be ICU nurses or the like. Nurses also are not typically allowed to do trach change procedures, though obviously it is necessary that they be prepared to step up in a setting like mine if I need one in an emergency.

Respiratory therapists get training on ventilators, what the settings all mean, how they effect a patient, and they learn to do trach changes and take blood gases (and do the lab work) as part of their routine in a rehab hospital like I was at. I very much enjoy the individual women who are employed as nurses for me, but geez. The rules don't quite fit the purpose and I need an expert just now.

Oh, and there's a new nurse coming to work here tonight. I don't know if she's ever done suction, worked with a vent, or what. So finding that out is my job tonight. I'm dizzy and tired and fed up with these regulations that don't really give me the full expertise they claim they do.

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* The cuff is the inflatable part of a trach that puffs up in the windpipe to ensure that the air going in the tube gets to my lungs and doesn't go upward and out my mouth and nose instead. The trach I currently use, a Bivona TTS, inflates the cuff with sterile water instead of air, which other kinds of trachs use. So when it burst, I immediately got about 7 or 8 ccs of water in my lungs in addition to not getting the vent air where I needed it. And we added about 5 ccs more before being certain the cuff was blown.

The photo above is the Bivona TightToShaft trach kit, which includes the trach itself (top left), the obdurator (shaped in a gentle curve like the trach, it's hard plastic that fits inside the trach tube to help with insertion), and the wedge or "tooth" (top right, used to unhook the installed trach from the vent tubes for suction or getting on clothing). The red cap to seal off neck breathing while leaving the trach installed and cheapo trach tie I do not use but both are also in the picture above. You can't really see the cuff, but it looks just like a little condom on the end of the naked trach. The tiny photo inset shows the cuff inflated.

** A blood gas (or arterial blood gas, ABG) is a blood draw taken from an artery in order to measure oxygen, carbon dioxide and other stuff. In this case, it helps determine if my ventilator settings are giving me too little or too much air.

*** When I say that I am the vent expert in my life, I mean that I know more than any person who comes in contact with me -- including the dude from the medical supply company who is supposed to come monthly and do a maintenance check on my machines. I know what the codes are for the various alarms when they go off, I know what the settings of frequency, sensitivity, tidal volume, expired tidal volume, PIP, PEEP, MAP, etc. all mean generally and in terms of what I suposedly need. I know how to cancel the alarm and change settings depending on if I am getting sufficient air, which varies according to how full the trach cuff is. I know that a high pressure alarm usually means there is condensation in the sensor tubes and I know the ways to fix that. I'm happy and proud I have learned all this in the past year, and it was my responsibility to do so, but given that I am required to have nurses in my presence constantly in order to receive state aid for home care, I am not thrilled that I know more than every single professional around me and that their nursing training does not mean they bring the actual vent machine expertise to the job.