Radiation Routine

We think Keith is getting used to the routine which goes a little something like this...
12 A.M. Administer anti-nausea medication.
1 A.M. Shut off feeding tube. Very slowly flush the tube.
6 A.M. Administer anti-nausea medication.
6:05 A.M. Start and warm car and load DVD with his pre-chosen Chip and Dale episode.
6:15 A.M. Grab Keith from bed and strap him in his carseat. He's much happier now that we have a show waiting for him to watch. It is conveniently the exact length of time it takes to get to the hospital.
6:45 A.M. Enter Radiation Oncology Unit. Read a story or watch cartoons on my phone.
6:50 A.M. Anesthesia nurse takes Keith's vitals while he resists by usually telling her to go away or asking me to get him out of there. I tell every nurse not to take it personally. Nobody wearing scrubs has a chance of winning his affection.
7:00 A.M. Anesthesia is administered through Keith's port while Brent or I hold him in our arms until he falls asleep.
7:05 A.M. We leave the room and wait.
7:40 A.M. We go to the recovery area while Keith comes out of anesthesia. Without fail, every day, the first thing he says as he's groggily waking up is, "I can't be brave. I can't be brave." Of course, the last thing we are always telling him when he goes to sleep is how brave he is, so it's pretty cute that he's continuing the conversation when he wakes up. What he doesn't know is that it's too late. He is already brave. He just doesn't know it yet.
8:00 A.M. Once Keith is fully awake and I dress him, we go back in the car and are home by 8:30.

The rest of the day is a balancing act between running formula through his feeding tube fast enough to achieve our calorie goal, but slow enough to avoid vomiting. Between the nausea from spine-radiation and from feeding tube issues, we often feel as if we're walking on egg-shells to keep him from losing critical calories. As of last Monday, Keith weighed in under 20 pounds. Scary. But despite vomiting every day last week and a few diarrhea episodes, he was still able to gain back 2 pounds by Friday. So that was a huge win. We hope as we get better at countering the nausea, he can continue to gain weight. I have a goal this week to get at least one vomit-free day for him. His mood seems pretty directly tied to throwing-up, which is still pretty traumatic for him. You wouldn't think so since he's been doing more than a fair share of it since 2011 began, but still, he's only 3 years old.
Cole is so sweet when Keith is throwing-up. He continues to repeat, "It's okay, Keif. It's okay, Keif," in the sweetest voice. And he often begs to rub Keith's back when Keith is asleep. "I'm just going to rub Keif's back for a wittle bit, Mom."

Cole has also started reading Keith stories before bed. He has matured a lot through all of this. He is incredibly thoughtful and often asks Keith if the feeding tube is bugging him. When Keith answers in the affirmative, Cole asks if we can take it out for Keith. He is his brother's keeper, for sure.
I often worry about Cole and how this affects him too, but he continues to surprise me in his handling of change. Kids really are more resilient than we would expect sometimes. His one quirk has been to start fake-sneezing whenever we ask him to do something he doesn't want to do.  He'll start sneezing uncontrollably and claim that he's too sick to go to bed or too sick to clean up his toys. If that's the worst side-effect that comes out of this for him, I'll take it. Gladly.
So, anyway, once home from radiation, the day is fairly normal, with the exception of running Keith's feeds, cleaning the bags and giving medication here and there. It does have its crazy moments, like when I'm holding the puke bowl for Keith while Cole is dancing around the bathroom half-naked, calling for help with getting his underwear on the right way and Ally is screeching at the top of her lungs in front of the fridge for food. She has developed quite a high-pitched squeal that drives us all nuts. She knows it and she's not afraid to use it to get what she wants.

Fortunately, the crazy moments are few, especiallly since I've had so much help in the form of grandma's, sisters, sisters-in-law and our Bishop's wife, Debbie. Everyone needs a Debbie, especially in moments of crisis.

Overall, we are glad week one is over. It started out rough, but definitely got better by the end. Keith's mood has improved as we have honed our nausea-combat skills. We loved seeing him smile more this weekend and doing lots more walking and playing.

One week down. Five more to go.