Con is napping on me, his IV pole is across the room disconnected!
Dr. G. Knows how active Con is so had approved disconnecting for a half hour between chemo drugs last week so he could walk around freely, but we ended up not doing it with all his complications. Well today Con is just getting his antibiotic and maintenance fluids, everything else is oral and honestly feeling good and wanting to walk around, so I broached the topic first with our nurse who said detaching him would be likely, then with the attending who said no. I was bringing up that Dr. G., was going to let it happen last week, that he loses so much while in the hospital, that it causes him to trip and fall and he loses his confidence and tantrums, well as I was going on and on about this Connor decided to perform as if on cue, started flailing around super frustrated, standing on his wires, tripping and tantruming all while kicking me (I leave the hospital with bruises all over my body), it was then decided since he is eating and drinking that the there was a risk benefit of disconnecting (infectious disease had to approve because every time you connect and reconnect an infection can be picked up), and Connor is officially disconnected and not just for the half hour I was seeking but until his next antibiotic dose, or 5:30!!! He is going to be so pumped when he gets up from his nap! This helps on so many levels, first Con can move freely and we can actually progress with his walking while here, second when he only has one visitor (like today only my dad is coming) it is very hard for me to step out because if you aren’t here all the time it is hard to control both Con and the IV pole, and third because it means less diaper changes, and less concern of chemo getting on me so in turn means worry free cuddling! This is a huge win for today!
Con finally got his CT Scan at 4 pm yesterday, this scan was purely for Boston to do some preplanning, but I am hoping no news means good news and nobody saw anything new, hoping to see Dr. G. Later today and if I remember will confirm. Con was such a trooper waiting until after 4 to eat or drink, here is our Cookie Monster after, one for each hand and a third in his mouth, silly Con.
As for what is going on, it appears, knock on wood, the mouth sores are at bay as his appetite is back and he is eating everything and anything. The rash looks a lot better, and he has not had atavan since 1 am as we are trying to see how he does, we are only a little over 48 hours out from the cisplatin so my guess is we are not out of the woods, but we are trying to move him from round the clock to as needed we will see. Con also spiked a fever again last night and now an earlier blood culture is growing a similar bacteria so we are waiting to find out what it is, hopefully later today. He also has swelling again, neurosurgery is also going to weigh in to make sure nothing is leaking. There is no talk of any plans for home, but if I see a doctor I hope to bring it up or at least a discharge followed by an emergency room admittance to our local hospital ( this will never happen, just wishful thinking on my part and plan on planting that seed). Just really want to see Claire, Con does too he keeps asking for her. That’s it for now.