Yesterday, Derek had been approved to stop the drip feeding to his tube and wait a few hours and start a bolus feed (which is what he does at home by dumping in a can of food all at once). Also, his blood counts were all okay to restart the pazoponib. (Two days earlier when I thought we were going to, I learned we had to watch multiple counts, not just the one they had told me, so now they were all above what they wanted to see.) So, it was an exciting afternoon for a couple hours. Then, his head started hurting on just the right side and his right side of his face. The normal pain med he was ordered did not take it away, just lessened it. This morning they have upped that med, and hopefully he will have full relief from that pain. But new pain like that probably isn't a good sign.
Then, just before I was going to bring the chemo over from home last night, the nurse put some regular meds through the stomach tube, and it leaked all over. Thankfully, that was not the potent chemo drug dripping all down his skin. The tube had not been leaking much at all. Also, the contracting/popping he had experienced in the ICU with this tube started up again and was doing that constantly, much worse than earlier in the week. This causes pain, and he was pretty miserable late last night. Also discouraged, because of the setbacks.
So, this morning we are supposed to see a GI doctor or surgeon to look at this stomach tube and get it figured out. It's been a problem from the start, so I hope they just put him to sleep and replace it with the old style tube that he liked, but we will see. Also, they referred him for an appointment with hematology supposedly to determine "why" the blood counts dropped. This is somewhat frustrating for me. They dropped either because of the new chemo or because of infection, but I don't understand how they will know which caused it, and even if they know, what are we supposed to do about it? He can't reneg on the chemo they gave him (the 2-month dose one), and they can't keep him "infection-free". The only thing we could possibly do is withhold the chemo that WASN'T causing the counts to drop in the first place, and that doesn't make sense at all. It was working on the tumors and helping. So, it seems like an unnecessary delay to me on getting the other chemo going again. Pray for my patience and understanding.
I'm sorry to have this setback. Please pray for endurance and love love love.