Lots to report today. When I got to the hospital this morning, I grabbed a little breakfast in the cafe here. The senior surgery fellow was also grabbing something. She came over and apologized to me. I though it is so funny. Last week when she was examining Bella because her tummy was so distended, she didn’t know who I was. She was speaking medical to me. Fortunately, I’ve been here long enough to understand everything she was saying. As she was speaking though, I thought, “She doesn’t realize I’m the Mom.” Today she apologized and told me that she thought I was the resident. She wanted to make sure I didn’t think she was being insensitive. No, I personally would rather have the truth straight up than dumbed down.
The first thing I always do when I get here in the morning is my own personal assessment. Then I ask the nurses how she is doing. Today I noticed her little hands were bright pink and hot. Her little toes were headed that direction. Our poor anesthesiology fellow had no clue what it was. I said it looks like an allergic reaction. So we waited for rounds with the attending. By that time (2 hours later) , the pink is all the way up her arms and starting to march across her chest. It is across her checks and her ears. Her feet are bright pink and it has crept up past her knees. Her nose looks like Rudolph's. Dr. Stein took one look at her and said, “What meds is she on?” Turns out they started bactrim very recently. So that has been discontinued. And she will be given some Benadryl – and we will watch this. So, note to self. Bella has a sulfur allergy. Do not allow sulfur drugs to be given to Bella, otherwise she turns into a little cherry.
I have the best nurse today. She has the heart of a teacher. She is allowing me to give all the meds that are through her g-tube. She is going to teach me the trach care. She is setting up our trach CPR class. Yeah! I love days like this when I can learn.
We are still playing with low grade fevers. She continues on TPN and lipids until the surgeon clears her to eat again. We are going down on our fentanyl and versed drips. If all goes well, those should be off by tomorrow some time. So we should be heading to PCU in a day or two. There we have to learn how to care for our girl. We are making steps toward home!
We have been here 5 weeks, 3 days this stay so far.