Day 10 Hospitalized: October 23, 2015
CBC: Whites: .33; Hemoglobin 9.2; Platelets: 55,000; ANCs: too low to count
Liver Function: Total Bilirubin: 4.5; Alkaline Phosphatase: 318; ALT 63; AST: 58
We were all ready to go home today, until some doubt was introduced by the Nurse Practitioner, who always comes in first. I knew they had the scan results from yesterday, and I knew the scans showed nodules, which is indicative of a fungal type of pneumonia. She said they were concerned with the scan results and wanted to address the treatment options. She said she wasn't sure what the game plan was, but it didn't sound positive for going home.
The "herd" of doctors don't usually get around to Todd's room until around 11:00 a.m. when they are making their rounds. (Wish I could take a picture of all of them with their rolling computers. Formidable and Serious group). Dr. Sekeres and his team came in and began discussing the CT scans of the lungs acknowledging that there are many ways to classify pneumonia, especially molds or fungal pneumonia, and when a radiologists uses the term "nodules" this is usually a key term describing that type. He said they thought that since they took away the Voriconazole, the antifungal he was on before, they noticed his bilirubin decrease; so they believe that the Vori was causing the high elevated bilirubin. Now that they feel confident it is a fungal pneumonia, and not just guessing as before, they have to put him back on a antifungal drug, but not the Vori, so he suggested another drug that is allowed under the AG221 drug list of approved drugs to take, called Micafungin. This medicine is only administered once a day per IV and Todd will have to be on it for at least 30 days.
So until they can get some kind of home healthcare in place, where he can get the IV administered at home, he will have to stay here to get it! And of course, we learned last weekend, not too many people in healthcare work on the weekend. Dr. Sekeres thinks they can get it set for us by Monday or Tuesday, so Todd can be discharged on Monday. (Not holding my breath at this point).
The doctor has also called in an infectious disease doctor to consult on the treatment of the pneumonia. Two different doctors can in today, asking a ton of questions from the name of every country Todd has ever visited to his most recent activities. They brought up the option of having the bronchoscope done to better determine the exact type of fungus in the lung, so that they can recommend a precise drug treatment for it. While they will have to discuss this with Dr. Sekeres and consider the risks (once again) of doing the procedure with Todd's low platelets, she felt certain that it was crucial it get treated properly and thoroughly or it could spread or get much worse.
So, we sit around and wait. Todd is feeling much better; more like himself. He is still napping, but today he has sit up and watched TV, talked on the phone, and actually ate very well. I think he is really ready to come home and hopes to get back to a normal routine. I have already told him not to expect to be running around, but to plan on resting a lot and staying away from large crowds, sick people, and outdoor activities involving wood, etc. His whites and ANCs are precariously low and the risk of getting another infection puts him at high risk. This whole experience has been a wake-up call to be more cautious in what he does, whether he is counts are up and he feels good, like before, knowing that he is still vulnerable!
Anyway, I don't think Dr. Sekeres is going to be too keen on having the Bronchoscopy done, but we will see over the next two days. Meanwhile, we are trying to hang out and not get too impatient. They continue to give him the Zosyn antibiotic IV every 6 hours at 12:00 and 6:00 round the clock. He is still on his antiviral and has been able to take the full dose of his AG221.
It is going to be a long, slow road, and we just need to acknowledge it with patience. Thanks for your prayers and support.
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