Journal entry by Denise Allen —
It was now Friday afternoon. Morgan stayed for an hour or so with Mary and I. The ICU staff was great – the nurse brought in a reclining chair so I could stay with her overnight. Originally they were going to have me leave at shift changes (standard policy) but after they reviewed her medical history, med list and allergies, and realized she had no way to communicate since she can’t move her hands to write at all, they decided to just shut the door to maintain patient privacy while they made reports.
Mary and I struggled to find out how to communicate because she wanted to say so much more than answer yes/no questions that we had planned for. I was lipreading her and interpreting for the nurse, doctor and respiratory therapist. I finally ended up writing out a letter board. After several frustrating rounds, I explained to Mary (after slowly spelling them out) that “crackle” and “struggle” are hard words to lipread. She did have (and continues to have) quite a bit of anxiety. Every time she woke up, she would start panicking that she couldn’t breathe. We would explain to her that all her vitals were good, that she needed to breathe through the trach on her neck, that she wouldn’t be feeling any air in her nose or mouth if she tried to breathe that way. This continues to be the hardest part – it is the one thing that all the trach patients we talked to mentioned – the difficulty and anxiety around adapting to a new way of breathing.
I spent Saturday morning working my way through Mary’s list of phone calls, texting and emailing people to let them know, then posting on Facebook. She slept through it all.
On Saturday afternoon, they told us she would be moving back to the Respiratory Care Unit once they shuffled some patients around so she could be right across from the nurses’ station. Michelle dropped off a package that had been delivered to work and also dropped off refills of the prescription the hospital doesn’t have. Kathy came by with a care package, and took laundry home with her to wash for me. Brenda brought another care package and went out to get dinner for me. Kathy, Brenda and I sat in the family waiting room while they transferred Mary to her new room, then I went in first to make sure everything was there that was needed. This time, I had the Kangaroo Joey pump in my arms, and the ICU nurse personally brought over her prescription, and all the equipment. Kathy stayed a while until Brenda came back with my dinner, then headed out with laundry. Brenda stayed a while to make sure I was eating (a challenge since we arrived), then I sent her home. It was close to midnight though before the cot arrived for me to sleep in.
By that time, we had realized Mary was running a fever that was slowly going up. Labs were taken and we waited for results. The nurse consulted with the charge nurse, and it was decided to continue monitoring her closely before taking action since she had just finished a Z-pack last week and has so many allergies. It was a long night. Finally her fever broke on its own some time around 4am. I woke up as the shift change rounds were happening, tried to sleep a little longer, but Mary woke up again with some anxiety and by the time we got her settled down again, the caffeine withdrawal headache was in full force. I realized I had only had one cup of coffee yesterday. Egads! I ran downstairs for a scone and coffee and came back up to her room.
We are expecting a few visitors today, and I am hoping while a couple of them are here I will be able to make a trip to the car to put some things in and bring some things back, and take a shower.