6 am wake up, get ready, nothing glamorous here, just comfort clothes. Leave the Ronald and check out the sign by the elevator to see what's going on...Falling Leaves Ball...I hate we always miss fun stuff. They are really good about putting together activities for the families here. Oh well, time to leave.
Walk out of the RMH house towards 1st Ave,
Hit 1st Ave, then head south towards Hospital; about five blocks up.
Made it,
First things first, go straight to cafeteria to get us breakfast. They have the best bacon. Then it's upstairs to M9 where George is already up, but Clayton is still sleeping.
George leaves to go clean up and Clayton wakes up almost immediately. Even in the hospital though, he wakes up in a good mood. He like me enjoys the views in our nice new room.
No roommate right now, so we have the run of the place. The next few hours are spent pacifying Clayton until the nurse comes in to give him his shot. (Shots are one of the things I forgot to mention on my post about our life with cancer; we would have to give him a shot like everyday for two weeks; shots and mouth sores and mucusitis, things come to me randomly). Anyhow, we give him his shot and then the nurse returns with his premeds. He gets vistral and Benadryl, Tylenol and a dose of dilaudid. Then we wait. The premeds have put Clayton into a groggy...and grouchy state of mind already.
They usually premed the kids an hour before treatment, so we just wait and see. Finally around 12:15ish, Lea one of the research/3f8 nurses shows up to get started. They rush around getting the blow-by and the nebulizer ready, make sure we have extra sterile water, hook him up to all of his lines and monitoring devices, gather up some hot packs and cold packs, read off the numbers and DOB on Clayton's ID bracelet and before we know it, the infusion has started.
It takes a few minutes to kick in, so everyone has time to assume their positions. I crawl in bed with Clayton; it is my "job" to hold him, try and make him feel safe, and hold the blow-by to ensure he is getting sufficient oxygen saturation. George stands behind me ready to rub cold packs or hot packs all over Clayton's body to help ease his discomfort; it is usually hot packs in the beginning and then cold packs to cool him off at the end of things. The dance therapist stands at the foot of the bed with her rain-maker stick and softly rolls it while she rubs Clayton's feet. The 3f8 nurses stand on the other side of the bed ready to access any emergency and to administer any pain rescues or extra doses of Benadryl. He already coughed a couple of times as part of an allergic reaction, so they break out the nebulizer. He doesn't like that. All of our eyes dart back and forth between Clayton and the monitor reading off his oxygen and heart rate. We are waiting for it to tell us what he doesn't; that it is coming, the pain. Sure enough, 15 minutes in, it starts; his heart rate spikes from the 130s to the 160s and keeps climbing. Everyone starts scrambling trying to figure out his cues to see what he wants and needs that he can't tell us. I follow him around with the blow-by as he thrashes from side to side and George trys to figure where Clayton wants the hot packs today to make him feel better. The nurses administer a couple of pain rescues to try and bring his heart rate down, which makes following him with the blow-by more of a chore, because more of the pain meds, means less oxygen saturation usually. We know the intense pain will pass, it is just how soon. One of the nurses goes towards the foot of the bed and cups Clayton's behind in her hands and starts moving his body in a way that simulates gently rocky. It seems to work for him. Ten minutes later, the intense pain seems to subside.
The infusion is over and now it is the flush. Clayton lays there grunting as he works through the residual pain. It might be more of a sporadic whimper. Everyone gradually disperses. Clayton continues to stay fairly irritable the rest of the afternoon and has George and I spending most of our time trying to soothe him. He still has hives and is a persistent scratcher. We also gained a roommate this evening; a 20 year old guy, unusual roommate for us. I feel bad for him. Finally, George heads to the RMH around 9 pm and I try to sleep with Clayton. Unfortunately, it took a little while before he seemed able to rest peacefully. We'll see how the night goes.
All in all, it wasn't horrible. Well it was, but we know it could have been worse, so we count our blessings. It was almost the same as last time, so at least we were able to be prepared for that mentally.
One day down...
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