The Transplant Clinic is absurdly efficient. Check in, pick up lab orders, get blood drawn upstairs, eat, return and get put in a room. Usually we arrive shortly after 7:30 and get out by 9:30 - 10 on a bad day. Not so the Adolescent Clinic.
To give as much leeway as possible, we were gone for an hour to Neurology. Had that not happened we'd have left by 12:30.
So what the heck is the point of all the extra people? And all the extra time? And what is the bill for this going to look like? Usually it's about $400.
The point is simple: Keep the kidney alive.
I've mentioned before that 14 and 19 are common rejection ages. CHOP is constantly doing studies to figure out why, and what can be done to make sure it doesn't happen to their kids. So there were some common themes to the questions asked of Babygirl yesterday. And yes, for the first time, all questions were addressed to HER, not me.
"Do you know why you have been asked to join this clinic?" Explanations were given about the need to gain control over her medical care. One provider said, "It's like learning to drive. No one would just hand you the keys and expect you drive on the turnpike. You need an adult sitting on the seat next to you while you practice in the parking lot for a while." Our job as parents are to include her in pill sorting, set up HER phone to get the text message reminders, and gradually allow her more responsibility over her care.
"How is school going? And what are your friends like?" (And privately, to me, "Do you have any concerns about her friends?") Teaching a kid that choosing good friends and avoiding dangerous ones is challenging for all of us. It's good to have some backup on this one. I'm guessing that kids with drug-using troublemaker friends might have some problems with compliance?
"Do you know what medicines you are taking?" Yes, all but two - the blood pressure med and the bicarbonate. "Do you know how much you take? How often?" Not so much, and pretty much, respectively. In an emergency, you need to know what you are taking, exactly. This would clearly help avoid med errors at other hospitals. And it would certainly help her transition to another doctor if needed.
Babygirl tells me that the questions asked behind closed doors (in the 15 minutes I was thrown out of the room LOL) were still about her friends and social life. I guess they decided that bluntly asking if she has sex or uses drugs was not on their list yesterday.
The psychiatrist spent some time exploring the depth of her friendships and the changes that began happening with dialysis. Babygirl used to have a lot of sleepovers both at home and at friends' homes. That stopped completely with dialysis. She really couldn't go overnight elsewhere without a lot of preparation, and she didn't want her friends to see the bedside commode and dialysis equipment in her room. She still doesn't want friends to come over. I'm sure the concern here is social isolation and depression. The doc was relieved to hear about her frequent contact with her best buddies - her sisters - and in the end seemed satisfied with the quality of her life (either that or he has a phenomenal poker face).
Adolescent Clinic is a twice-yearly event. So if it weren't for the Hypertension Clinic, we'd have a nice short visit in between. And THREE MONTHS!!! Whoot! It's a record! I texted the date of our next appointment to my sister-in-law and she was quite surprised. We didn't even get an order for blood work in between.
I guess we can live with longer, far more infrequent visits. Yes, yes we can.
DeeDee
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