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...
First of all Connor is no longer in pain, mouth is cleared up, weaning off the meds (slowly to avoid withdrawal). But Connor has lost all patience. He's still sweet and kind and trying so hard, but he's back to having two modes.... Sleeping or puking. GI was brought in today to discuss nausea and suggested abdominal breathing and getting up and moving. I don't disagree that more meds are not necessarily the answer, they so far seem to put him to sleep, but if he stands, he pukes. (Not even entirely sure the nausea and vomiting are connected, the vomiting happens very suddenly and very violently.) Hard to walk around if you are puking. He is positive for C diff, another infection, so another antibiotic that once again has nausea as a side effect. Honestly don't know what makes him sick. Meds? Pseudocyst? Chemo? All of the above? Doctors don't know either. I begged the staff to do more, that this isn't any quality of life.... Hopefully they find something.
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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