You Don’t Know Her

 We have been in the hospital for over 4 weeks.  My biggest problem with this hospital stay (aside from illness necessitating our stay) is the lack of consistency in her daily care. There are so very many doctors involved, and I feel as if they are sometimes working against each other. I believe they are trying to do their best, but they are unused to someone with such a complex history and constant needs. Having different nurses and nursing assistants caring for her also does not allow for consistency. They rely on their computerized charts which is all well and good, but if there is something that isn’t noted in the chart, or is for some reason not seen by the next shift, things fall through the cracks. Things like IV’s not restarted, medications not sent by the pharmacy at appropriate times, and lag times in care such diapering or positioning changes all lead to inadequate and potentially dangerous medical consequences. I do not fault the staff, as there are truly not enough of them working at any given time. They are doing their best, but with such a complex case it cannot be enough. This is why I stay, why I camp in this uncomfortable recliner that is terrible for my back & sleep in my clothes. It’s why I leave the building only when my husband is here with her, and grab very quick meals in the hospital cafeteria when he’s not. So when the staff tells me to go home and rest, and when I decline ask me if I don’t trust them, my short answer is no. It’s because you don’t know her like I do, you don’t understand her nonverbal sounds, her looks, her wants and needs. So I stay. And I will do so until I can take her home with me. I will ask you questions and tell you when I don’t agree, and will turn away from you rather than yell at you or slap you; I will act like a reasonable adult so you have no reason to brand me as “an emotional overreacting mother”. This is my child, who I have kept safe & healthy for decades, and plan to continue to do so as long as I breathe.