1.2.18 Nursing

It has been hard to know what to update, since things have been pretty steadily confusing. Aimee is still nauseous and retching in the evenings. She is still most of the time uncomfortable, sometimes with a low fever, high heart rate, and cramping (we think). She is desatting through the night again. She is rarely voiding urine on her own and isn’t producing near as much normal. We have managed to add 6 more mls of water an hour to her intake. 

It all feels very unfamiliar. We feel unsettled and uncertain. Symptoms we would normally assume are sickness or an infection, are maybe related to her digestive system not functioning properly? A new normal, new processes, more care are all fine as long as Aimee is able to be herself, to enjoy her days, to interact and play. At this point, she doesn’t have very much energy and is rarely awake. 

 

She has had multiple dressing changes for the wound VAC since we’ve been home and the wound it continuing to fill in. It may move to a wet/dry dressing in a week or so. We are pretty nervous about that transition as it means multiple dressing changes a day (more skin irritation/breakdown) and a higher chance for infection. But, at some point, it will no longer be an option and we will have to move forward from the sealed wound VAC. For now, we are so grateful for it and the huge difference it has made for Aimee’s wound.

In positive news this week, Aimee had an RN start providing care at home. She was approved for 56 hours a week of nursing care through insurance. We chose to use four 10 hour days for now with one nurse and see how it works for our family. It is definitely different, as there has to be doctor’s orders for everything that the nurse does. It isn’t impossible to get orders, but it takes a couple days. It is also a new person in our home, someone that we are just meeting and trying to get to know. We are hopeful that it will be freeing and will help us provide Aimee with the best, most safe care.