Journal entry by Denise Allen —
Mary is still in the hospital. She has completed the 7-day round of IV antibiotics, but now is dealing with a case of thrush. We are also making more adjustments to her anti-anxiety medications in the hopes of both decreasing her anxiety and keeping her more alert. The last couple of days she has actually been listening to music in her room when I arrived after work – something she was not interested in for the first month of living with the trach. She still is not very interested in watching TV.
She is still communicating by mouthing words and us trying to lipread her. The hospital speech therapists were asked to help train her on the Tobii (eye gaze system) and got sidetracked for a couple of days on working on her speech abilities – they were trying a Passy-Muir valve on her trach without checking with me, and which caused her extreme anxiety because she could feel the change in her air intake. I had the ALS neurologist rein them in, and we are now waiting for approval to have the Tobii specialist from another hospital to come and visit her to work with her.
After nearly two months of looking for caregivers, we still only have our amazing Morgan. Mary’s care is so complex and complete that it is draining the nursing staff at the hospital – they have no idea how I was able to care for her basically alone (Morgan was out of town) for 15 days. We have decided that since we cannot find qualified caregivers (they just aren’t out there – others with ALS are having the same problem in the Portland area), we will be looking for an adult foster home for Mary, where she can have 24-hour care with multiple staff instead of one or two people. One of the hospital social workers is working on that. There are not many places that take patients on ventilators, and even fewer who will take patients who are functionally quadriplegic as Mary is, and then the issue is finding one that has a room available. Until we find a place, Mary will be in the hospital. I am asking for prayers for the best possible home for her, in a place where I can easily visit her as often as I’d like, where I can trust the staff to work with me to provide the best possible care for her.