Duplicated on our CaringBridge site for permanent record here.
St. Valentine's Day, February 14, 2021, written by Mama
89 days in the hospital: 63 in PICU, 26 in the Oncology ward
Today was a milestone for Thomas! He had his first shower in three months! All this time, he had wipe-downs with glorified baby wipes and occasionally we would go all out and use a wash cloth and Johnson's baby shampoo for a bed bath. Today Thomas felt brave enough and ready to try a shower in a special shower chair we borrowed from the Rehab floor. We used AquaGuard plastic sheets (glorified plastic wrap) to cover his central line, his surgical drain, and his healing forearm incision. Then when the safety strap (about 5" wide) was wrapped around his chest and the chair, this boy didn't have a whole lot of skin still revealed. Thomas controlled the shower wand so he wasn't nervous. In the end, this milestone made me most happy of all because it is such a special thing to care for the body of one's baby, no matter how old the baby. He smelled so good from the soap and his hair is softer than it has been yet.
It was otherwise a fairly quiet day, as Sundays are on the Oncology floor. Rounds lasts all of 5 minutes. Thomas is so stable that now his vitals are taken only three times daily. He asked me to set up another wheelchair scavenger hunt with his plastic animals, so that was fun. He also created both a zoo and a jungle background for playing with his animals.
On such a quiet day with no news, I can share two stories that percolate in the background.
Thanks to Daddy's leadership at some point during this hospital journey, Thomas and whichever parent is with him pray whenever we hear a Code Blue. It has been explained to Thomas that a person is in "big medical trouble and needs a lot of help" when we hear one. We hear all the Code Blues for the children's hospital and the attached adult's hospital. We hear numerous Codes every single day and it weighs on me with an adult understanding that I'm hearing some family's worst moment of their life. It has become such a habit that now Thomas hears them himself and alerts me instead of the other way around. (We also pray when the helicopter lands on the hospital roof.)
Another topic my brain noodles on daily is how to resume and continue requiring polite behavior from a child who has been acutely ill and who still is not mobile, not really in a position for consequences. Many nurses and I have chatted about it and, while they have to guard what they say, they have made it clear that many children and teenager patients treat them rudely or meanly and too many parents allow it. I've had nurses tell me essentially, "Even if a kid is acting badly because of the medications he is on, it would still mean a lot to me if the parents would say, 'Sonny, your nurse doesn't deserve that.'" This is a challenging area, to say the least, and one that is constantly changing with the age of the child and the sickness of the child.
In our case, pretty soon after Thomas began talking again, I began requesting he say 'please' again. I began prompting him at every encounter to say, "Hello, Miss J---" to his nurse. As we say goodbye to staff--and there has, at times, been many, many visits from staff each day--I tell Thomas, "Please look at him with your eyes and say goodbye." I also set a rule, just like I would for any of my kids outside the hospital, that if a person enters our hospital room, Thomas must pause his iPad. I had to do it for him for quite a while, then began requiring him to use his cute little fingers, and I notice in the last two weeks that now he is just doing it himself immediately. Of course, he might still say to a top surgeon or oncologist at his bedside, "Excuse me, would you please leave? I want to watch Mr. Rogers"! Thankfully, they just love him using his words.
As Thomas got stronger, then I began not just requesting Thomas say 'please,' but not giving him what he wants until he says 'please.' When he first began talking, he could say so little, so he might just say, "Water." Then he was strong enough to say, "Water, please." But if he can talk a doctor's ear off about colossal squids, then he is strong enough to switch from a royal command to a request, "Mama, may I have water please?" That's the step where we are now!
A related area of concern is that children in the hospital receive toys . . . so many toys. Essentially, a Child Life specialist or Social Worker doesn't walk in the room without a toy or new book in hand. A lot of these toys are really nice, even $20 apiece. Parents can perhaps envision that no kid's character benefits from receiving brand spankin' new toys many times per week for three months in a row. I know from conversations with staff--I ask so many questions--that some patients become very demanding about toys. I'm a mother of six kids, so I do not think children are born noble savages. So, at some point, I saw the signs of lack of gratitude nipping at our situation and I asked Child Life to stop walking in with toys. It doesn't mean Thomas never receives anything, but they can be smaller, fewer, and further between. When I told this to one Child Life Specialist that when the therapists come to play with Thomas, I want them to tell him to pick among the generous collection of toys in his room (or he can always borrow a toy from the Play Room), she eagerly accepted my offer and said, "Yes! We can support you in this. We think this is a good move for children." After backing off toys for a few weeks, the Child Life Specialist recently told Thomas he could keep those eight tiny plastic animals (that probably cost $2 or $3) "only if your Mom gives permission," which I did. This child was so grateful and entertained, he has played with these animals for hours and hours over two days now. Now that's what we parents want to see!
Sometimes Thomas is very resistant to doing his PT and OT. I get it: it's physically hard, it's often scary/vulnerable, and he's totally bored because he doesn't get to leave a small ward, nor go to the Very Cool Therapy Rooms on the Rehab floor. Nonetheless, it presents a challenge when he speaks rudely to a therapist, even raises his voice: I can't bribe him with food or outings. I can't take away food, outings, privileges. Can't swat his little bottom. Not going to yell at him. Minimally, I talk to him about how that kind of talking is not acceptable, I get him to say sorry to the therapist or I say sorry. Usually I can turn things around. Lately I've hatched a plan that he will get to earn the television he wants to watch by doing his various therapies.
Politeness goes a long way in life, even (or especially) in a hospital setting.
I'm at home this afternoon and evening while Chris has a great overnight with Thomas. Thank you to some wonderful community members who brought St. Valentine's Day cards and treats to our children, as I certainly could not manage to organize that this year.
No comments:
Post a Comment