Negotiations

Today started with me thinking we would be inpatient for a bit longer but it ends with Rye sleeping peacefully in her crib and me cuddled up in bed with the pugs. During rounds this morning the team told me we would only check labs on Monday and Thursday. The main reason I hadn’t battled staying inpatient for the antibiotic was because we were checking labs every day. Which would be hard to do on the weekends if aren’t in the hospital. So after that news I decided I was set on operation get us home. Jeremy had initiated that before he left for this run but I hadn’t jumped on the wagon yet. I doubled checked with our liver doctor from DC and she said if I felt comfortable giving it at home to go for it. Since Ryman is more herself and eating great it just seems silly to stay and limit her activity and ability to get a good nights sleep. The negation is that we will go for labs in clinic on Monday and Thursday and get readmitted once we finish the IV antibiotic in order to switch to oral doses. We will have to do that inpatient to make sure her electrolytes are stable and that her prograf doesn’t absorb different with this new medication. It has been known to do that do we aren’t going to take any chances and do the switch inpatient to watch her closely. We will get a pump and the antibiotics delivered to the house tomorrow and nurse Brandy will be full force again. Our pharmacist, Tim, at Pharmacy Care is amazing and he is delivering all her other meds to the house tomorrow. If you want an amazing pharmacist then you should check them out. They are an independent pharmacy in Nolensville but they have couriers who deliver in crunches like this or they just mail it right to you. Tim has even stayed up late making Ryman’s meds and brought them to the house himself. They are so great!! This afternoon Georgetown called they have decided that due to Ryman’s infection being so severe that she will do 6 weeks of the IV antibiotics instead if the typical 2-4 weeks. We received her latest antigen level and compared to last weeks level it is about the same she clinically is better but the fungal infection is just taking lots of the antibiotic to treat. Given that and the scope results they want to make sure we have it under control before switching to the oral antibiotic. Which today was mentioned that she may stay on for life. Yes, LIFE!! That’s how crazy this infection is. It can reactivate, especially in someone immune suppressed. So as long as she is on prograf she may have to take this antibiotic. I’m guessing only time will tell and how well she responds to this 6 week treatment. Your continued prayers are so appreciated. We love you all so much and are so grateful and blessed to have such amazing people rooting for our girl and for us. Good night! Breaking out!
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Chunky monkey went straight for the snack drawer.

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