No sooner had I written my last post, and Connor spiked a fever and we spent the day at the ER. We're home, he's tired, but better. No idea why, so we'll continue to monitor him as the Tylenol wears off. They gave him a dose of antibiotics so hopefully that'll help. Nothing else really showing in his blood work, except that because his counts are down he's susceptible to infection, so we don't take it lightly.
Tonight is Connor's 18th night in the hospital this stay. He can't wait to be home. We are aiming for Monday now. They are going to work on reducing his TPN (IV nutrition) to only a 12 hr infusion. And lining up delivery of those meds, and more micafungin. Connor is scared that he'll be too much of a burden, and we're scared that he'll need more help than we can give him. But we want him home more than we are worried, and just being home has some healing properties! I spoke with the oncologist and the endocrinologist and we feel like we have a good plan. The GI Dr did apparently suggest we add Cyproheptadine to his many medications. It's often used as an appetite stimulant, but they want to try it to see if it helps keep things moving in his digestive tract. We'll see how it works. They forgot to order his Kytril last night, so he woke up puking early this morning, and was sleeping from the Ativan when I got there. When he woke he had some reflexology, tried...
Buckle up, this is a long one ... It's been a long day back and forth with all the doctors. Kirk is in meetings tonight, so he took the morning shift today. First, Connor is in better spirits, but still nauseous. They are going to add Marinol to his anti-nausea meds to give him some relief. (a cannabis based drug). This was relayed to me by Kirk, so I asked if they would share it with us too, but not sure if they'll actually laugh or worry we'd take his meds!🤣🤣 They put him back on clear liquids because of the diarrhea, but he's not hungry anyway. They are down-grading him back to the regular pediatric unit today. Just waiting for an available bed. His hemoglobin tanked so they are doing a blood transfusion today as they wait for the doctors to figure out the next plan. I spent the morning communicating with his school, picking up a laptop and delivering it to the hospital as he preps to take his AP test on Tuesday from his hospital bed. (Of course, we'd love hi...
Hope the day is restful and uneventful!
ReplyDeleteHopefully the last night. This one has been a haul.
ReplyDeleteSo close!! Fingers crossed for tomorrow. 🤞💕K/C/M/L
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