I think half of you know it was an early start today. We had to be in IR (interventional radiology, where Josh gets his spinals) by 6:00! They don’t actually start the procedure until 8, but we have to go early for check-in, port access, meet with anesthesiologist, weight, vitals, so on and so on.
The LP went well, but afterward…YIKES! Let’s add another med to the NO_NOT_USE list. Different anesth. Doing the procedure this week. A very nice woman, but as the post-op nurse described, they are like cooks, they may be cooking the same thing, but each one likes to use their own personal concoctions to achieve their flavor. Learn something new everyday, and today we learned NOT to use Sevoflurane on Joshua. You all have read that Josh has adverse reactions to Versed and Ativan, meds that are SUPPOSED to calm him down. Instead he goes into a rage. Same for sevo. Today’s doctor’s recipe consisted of 60[units] of propofol (which is “sleepy milk” injected thru his port) and sevo (which is administered via gas mask). Usually Josh gets 150-200[units] of sleepy milk and no gas. Jon and I were no sooner in the recovery waiting room, when the phone rang, telling us Josh was awake. In fact, Jon had just left to go down and get me a coffee. Usually Josh sleeps a good hour and they have to wake him up then call us back.
When I walked into recovery there were two nurses around his bed trying to console him. The minute I picked him up he started kicking me and screaming for his daddy. When dad got upstairs (which was actually only minutes but seemed like forever) and tried to hold him, he kicked, screamed and cried that he wanted down. But putting him down didn’t help either. We were afraid he would hurt himself trashing about on the floor or bed, wherever his choice of down was for the minute. So this is another inconsolable med that turns our baby into a temporary monster. The nurse describes it as his body reacting before his brain can catch up. Who knows, but it lasts about 30-45 minutes, a seeming eternity when you’re trying to comfort your child in every conceivable way. I remember the first time this happened, when we were still in-patient, the doctors and nurses blamed it on the versed, before quickly shutting the door behind them as they fled the room. The only thing I could do was sit there, hold him, rock him and try focus on anything but the screaming. Oh and protect my face and groin ;-)
Once his anger subsided enough that we could comfort him, we got him dressed so we could make our way down to clinic for the new chemo of this phase. Weigh-in nurse, Donna, had an awesome frog that she gave to Josh. His name is Floppy. Josh couldn’t wait to bring him home to show Grandma his very own frog. Now he’s just like her ;-)
So the new chemo, cytoxan, comes with LOTS of BIG warning stickers all over it. I guess this is one of the ones that can burn your skin if it comes in contact with it. Makes ya wonder what it does to the rest of you. Which brings me to my next point. Because this drug can cause bladder damage, Josh had to be WELL hydrated before being infused. So before he could even begin that chemo, we had to start a glucose drip that had to hang over 2 hours.
2 hours, 2 chocolate milks and 2 trips to the bathroom later, the cytoxan was hung. This was a 45-minute infusion. And once that poison was emptied into my son, they finished with AraC, which Josh has had before during induction (phase I), but this one was *only* a 15 minute drip.
All-in-all we were out of there by 2:30 and home just before 5. Did I mention that we had to be there by 6?
Did you know that the sun still isn’t up by 7 this time of year?
Tomorrow and over the weekend, a visiting nurse will come and administer the next 3 infusions of Josh’s AraC. In fact, when we left clinic, they left his port accessed so Nurse Emily, wont have to poke him, and will only have to de-access it on Sunday after his last dose – for this week. Next week we will start over.
Without sevo.
And without the bladder-burning cytoxan.
Josh thinks it’s cool that he still has his lumen attached. Though was a little confused as we walked down the hall and realized it was still swinging beneath his jacket. Of course he had to show it off to his sisters once we got home, and already used it to “shoot” them with his super webs! ‘Gamma-n-Gampa’ will come later with some med-tape so we can strap it down, in hopes to deter Nathan from ripping the thing out – or to rescue Spiderman from pulling it out himself.
Real quick, as I’m nearing my 5000 character limit to this entry… I wanted to comment that this is exactly why I have been putting off so many updates. I just don’t know when to shut up. Then once I do tap the novel out on the keys, it kills me to have to replace it with another. I really should learn to be more brief…
