The last couple of days, Mary’s anxiety level seems to be improving. I did have a little scare in the middle of the night last night when the vent alarms started going off and two people ran into the room as I rolled out of the cot. She was still sound asleep but hyperventilating (40+ breaths per minute instead of 13) and some other numbers were about half of what they should have been. Turns out she had been “rained out” – too much water in the tubing to her ventilator. This is very similar to getting “rained out” on an apnea machine. Once the Respiratory Therapist drained the excess water and made sure she hadn’t inhaled any of it, all was quiet again and back to the new normal. There was another bit of info to add to my toolkit. I’m very glad it happened while we were here in the hospital so I’ll know what to do next time.
On another note, with the tentative plan to discharge her on Tuesday, I’ve been learning trach care. I learned how to suction out her trach yesterday, and I’ve been doing it today as well. The nurse on duty today was here yesterday and she said she had watched me suction enough that she is comfortable with me just suctioning Mary and not calling in a nurse unless something else is unusual. Yesterday, I changed the inner cannula for the first time, and I just did it for the second time. That’s a little more challenging than the suctioning, since I have to go more by “feel” when placing the cannula, and I have to make sure the ventilator line is securely reattached. I’m sure once I’ve done it a couple more times, it will be second nature. I also changed the dressing around the trach stoma by myself today. Progress!
We had quite a few visitors today. Mary’s brother and his wife drove down to visit for a while. They brought some more pictures to show Mary, and he asked some questions that gave me the opportunity to share with him the early signs of ALS. He knows he has a 50% chance of being “predisposed” for ALS with both their mother and Mary having ALS, but he chose not to have genetic testing done as of now. I mentioned that his daughters could also have it, and saw his eyebrow raise just a little. I’m glad he’s been giving this a little thought, because Mary and I weren’t sure he understood the implications of Mary’s diagnosis.
Just as they were getting ready to leave, another of Mary’s old friends that she hadn’t seen in 20 years came by. They stayed for a little while and promised to come back in two weeks. Mary was able to communicate a little with all four of them, nodding, smiling, winking, making faces, and mouthing words. About a half hour after the last of the visitors left, her ALS neurologist, Dr. Kimberly Goslin, stopped by to check on her. I filled her in on the discharge plans and she stated that we both actually looked more rested than the last couple of times she’d seen us. (HA!) She also mentioned that I looked less stressed; I told her she should have seen me last Friday when they wheeled Mary off to the operating room. She said she is hoping to come by again on Tuesday morning.
The pulmonologist was just in, and again expressed concern about the amount of morphine and ativan she is getting. I assured him we were working her back toward the doses she gets at home. He really doesn’t know her history (her usual pulmonologist is out of town). I told him yesterday that her morphine dosage is exactly what her home prescription is written for. I’ll give you that she’s not been taking ativan regularly at home, but she does have it. He doesn’t know that Mary already suffers from anxiety and has been managing this entire disease process for the last 14 months without taking any anxiety medication. I’m not overly concerned about it, and Dr Goslin didn’t seem to be either. So one of my projects is to run down to the car to see what the ativan had been written for on the home version so i have a target to make the pulmonologist happy.