1.5.22 Trach Floor 70

Ed’s post

So just to keep everyone guessing around here, Aimee woke up with a bit of a fever this morning. For those of you following along, yes, you did read that correctly. Last night she was too cold and now she is too hot 💁‍♂️. We were able to get her back down to her base line temperature by some environmental changes. Although, she has needed some oxygen throughout the day to go along with additional respiratory therapies. 

The team did agree to draw blood cultures to rule out a blood infection. We don’t expect this to come back positive, but want to make sure we are not missing anything. Last night’s viral swab did show positive for the rhinovirus, so this could all be from that. Hard to imagine this is all from a common cold. If it is, and I suspect it is, it seems ANY added stress to Aimee’s body is a lot for her to handle now. 

I have to admit it makes me a little nervous to take her home. My mind is a bit of a blur with hand sanitizer, gloves, masks, and disinfectant wipes. We have not had our training for the TPN and Central line yet, but I imagine they will have cleaning requirements for us as accessing her line in a sterile way is very important here. At the hospital we have to wipe Aimee down with CHG wipes and change her bedding daily. My prayer is simple, Lord help us keep Aimee safe and healthy. 

Met with the Palliative team today and officially changed Aimee’s code status here at the hospital to no chest percussions if not responsive. Rosa and I both agree that this is right for Aimee. The Palliative doctors were complimentary of our thought process, of really keeping Aimee at the forefront of our decisions. Last night’s nurse overheard some the conversation between Rosa and I about whether to continue forward with the procedure that was scheduled for this morning. A little after midnight, I finished telling the doctor that we did not want to put Aimee through the procedure. After the doctor left the room, the nurse commented to me that we are doing a great job of making decisions for Aimee. It just strikes me that she would go out of her way to say that. She is not a nurse that we have had often and really our decision was to play it safe. It is very reassuring to have these comments of encouragement. 

PS from Rosa,

I am at home with the other kids this week and wanted to share something fun. The kids have been awarding me with “homemade stars” for each food that I actually make when I’m home. So, if you don’t feel appreciated in your cooking, try my proven method. Barely cook anything for your family for months. They will then be so grateful for anything homemade that they will praise you and reward you with imaginary stars! 🤣