Caregiver Journal – Day 7 of the Trach Journey

Here we are at Thursday again, 7 days in the hospital and counting.
It’s been busy and I haven’t had  much time to update everyone.

Physically, Mary is healing well. Psychologically, it’s a real challenge. Every time she wakes up, she has an anxiety attack. My guess is she goes to inhale through her nose and nothing happens. She tries to inhale through her mouth and nothing happens. She feels like she can’t breathe, that she isn’t getting any air, and no matter how much we assure her that she is breathing, and she is getting all the air she needs, and her pulse ox is 98-99% almost all the time, the anxiety kicks in. Last night she said this is so much harder than she expected. I’ve talked to nurses and respiratory therapists, and it turns out that we have sensory receptors in our sinuses, on our tongues, in our throats that signal that we are getting air. With those receptors bypassed by the trach, the body’s message is “no air!” She can’t feel that her lungs are expanding even though I can see it – those same receptors give us that information. It’s a matter of re-training her brain to recognize new signals for breathing. I believe that once she is on the portable ventilator and can SEE the displays, she will be able to trust it more. We’ve tried and can’t get her in the right position for her to see the screen on the full-size ventilator. Last night she asked me to put her hand to her throat so she could feel the trach and tubing, but her arm doesn’t bend that far anymore. I offered to take a picture, but she’s not quite ready for that yet.

Her fabulous home health nurse is helping make phone calls, throwing his RN weight around to try to get information and answers from people I can’t seem to get through to. We also brainstormed so other possibilities for finding caregivers when he was visiting last night. I sent him home with quite the “to do” list.
I am doing phone interviews with two potential caregivers: one tonight and one tomorrow morning. I am hoping they will both be worth an in-person interview. Both claim to have experience with trachs and vents, feeding tubes, etc. Yes, I am checking their references, and I’ve already verified the license of the one who is a CNA. If we can get at least one of them on board for some hours this weekend, it is highly possible that we can get Mary home this weekend. Which means I need to start getting trained on trach and vent care myself – cleaning the site, suctioning, changing the inner cannula. But I think being home would help her anxiety immensely, having familiar surroundings, having Mango and Rafi around, having more control over her meds, not having to wait 10 minutes (or more) between requesting meds and actually getting them.

She hasn’t yet been able to use the eye-gaze system/SGD (speech generating device) much because she’s been so groggy. It’s going to take time and focus to get used to that. So she is learning a new way to breathe and a new way to communicate at the same time; very frustrating for both of us.
In addition to her home health nurse, we also had visits yesterday from two of my co-workers. One of them brought me a care package and the other took my dirty laundry home to wash.

Early this morning, someone delivered a new neck brace that will accommodate her trach. We tried it on briefly; here’s hoping it will be comfortable enough for her to use it. None of the doctors have been by yet today, but the Respiratory Therapist has been by a couple of times and says she is doing great,