12.17.21 Trach Floor 51

Ed’s Post

Well after three days of telling the team something isn’t right with Aimee, they are going to do some testing starting with mucus and urine. The crazy part is that if we were at home and we were to call to tell them the symptoms Aimee is having, they would tell us to come in to the ER. But yet we are here and they are like well let’s wait and see 🙄. 

We had our spine surgery follow up today with Dr White. He said everything looked great from his side of things. The only bummer part was that we did not have to do that seated X-ray now that she has been fully fused. It’s good for moving forward, but man that would have been nice to know before we went through all that effort to get a seated X-ray. I’m going to let it slide, because he brought us a pie on Thanksgiving 🤣. 

Update from Pulmonary/ Sleep: We are going to take a pause with the new med, Modafinil. Aimee is fighting something and not at her baseline. It doesn’t make sense to trial this med right now. 

Other update is from Urology. Whoever the doctor was that came in on Tuesday never updated his note to mention what we had discussed about flushing her bladder or the prescription that he said we could have on hand. My assumption is that he wrote his note before coming into the room and then told me what he thought I wanted to hear and left. So now the team has gotten ahold of someone else at Urology. They said no to the prescription on hand and we shouldn’t do flushes. Agh this drives us crazy. I think I’m going to send in Mama Bear. Rosa has a great ability to recall what doctor and when they discussed different thoughts. She also has the ability to speak their language. It is really fun to listen and to watch the interaction when she defends Aimee. I love it!