And here we have an examination of the real limits of a human being. Doctors who are reading this, pay attention.
Teddy’s had a few UTIs lately. (And I still don’t think we’ve solved that entire problem, but that’s a mystery for another day. Another day soon, but nonetheless, another day.)
The first line defense here is to put him on a pee schedule. He’s to pee every 2 hours.
Every 2 hours at my house, this happens.
Teddy, please go pee!
— Who is coming over? (because I always have him pee if we’re expecting company)
Nobody, it’s just time to pee.
— Where are we going?
Nowhere, please just go pee.
— I don’t want to!
OK, well, it’s time to pee. Please go pee.
— Maybe later. (This is Teddy’s way of saying no without getting in trouble)
Teddy. GO PEE.
— I already peed! (meaning, he already peed in his lifetime)
TEDDY. PLEASE GO PEE.
I’m not exaggerating. Every 2 hours. He hates it (because who would love being interrupted every 2 hours to pee?). I hate it.
PS, I didn’t ask them if they wanted me to wake him overnight to pee. I was afraid they’d say yes and that would break me.
I also have to constantly be after him to drink. He still spills cups unless it’s meal time, and he has trouble drinking out of various larger containers, so we still use a toddler-size sippy cup. I have to refill that sucker 10 times a day and then nag him to drink it. All. Day. Long. I hate it. He hates it. (And I still have to give him water overnight for the summer, lol.)
I also have to provide pretty much 24/7 supervision. Teddy cannot be left unsupervised. And yet he’s old enough to realize that just hanging out wherever mom needs to do stuff isn’t fun.
And then there’s eating. He still doesn’t really eat. What he does eat, I have to feed him. It can take an hour or more to eat a small portion of something. He does eat some foods on his own (chips with dip, which he would eat all day long, goldfish crackers, sometimes graham crackers, and occasionally yogurt) but anything that might be considered, you know, FOOD, no.
So this eats up basically my entire day. I mean, there’s also meds. Blood pressure. Regular kid stuff like baths and getting dressed. Running a home. Homeschooling. Taking care of the other two kids. Feeding myself. Occasionally doing something I actually want to do.
Oh, and he never sleeps. Still.
And I am just at my limit. I can’t add every 2 hour pee breaks to my already long list of crap I have to do all day every day. (Doctors: moms are just human. You say you want us to take care of ourselves, then don’t criticize us when we do it. You cannot just keep adding things and adding things and adding things without breaking the person you’re adding them to.)
So we decided to cut something out. And since the pee breaks and the water keep the kidney happy, but we have an easy alternative to the eating… we are dropping that for the summer.
And I feel really good about it.
His eating was going pretty good until his last admission, when he stopped eating entirely for several weeks, then started eating only a few crackers a day, and lost 5+ pounds. We’ve been clawing our way back since then, but he’s still not eating the variety of foods he was eating before, and he’s not eating as eagerly, and he’s not eating as much. And I’m tired of it being a thing.
It feels like when you really want your kid to start reading (or understanding multiplication) and so you push and push and they just don’t get it. If you drop it entirely for a few months and try again, sometimes it clicks the next time. (If not, drop it and pick it up again later.)
Maybe when we pick it up again, it’ll have clicked. In the meantime, I’m letting him have chips as snacks, but I’m not letting him eat them all day. He gets served food with the rest of us, or any time he says he’s hungry, and he either eats it or he doesn’t. If he doesn’t, whatever. It (or something else) goes in his tube. I’m not really willing to blend food all day long, so I don’t just blend up whatever we’re eating for him, but I’m using baby food packets now and will make a few blends next week or so, and it’s fine.
I don’t mind going back to blending and I’m good with not having “Feeding Teddy/nagging Teddy to chew with his teeth/Reminding Teddy to swallow/Spending 20 minutes trying to get Teddy to swallow/Developing new therapy methods on the fly to help him swallow/dealing with Teddy’s fear of most foods/firmly insisting Teddy at least lick the food” be on my to-do list 3-4 times a day.
You know, most kids have started eating full time by now after a transplant. Teddy’s not.
I won’t say I’m not disappointed, because I am. Everyone with a baby who needs a kidney transplant looks forward to life being at least fairly normal within a few years of transplant (I mean normal besides labs, clinics, and the constant worry about impending rejection and cancer). But whatever. This is small potatoes, and it’s something we’re familiar with.
Why not give up on the water, and just do the water overnight and stay focused on eating orally? Well, two reasons. a) he drinks willingly, he just doesn’t think of it on his own. b) that will NOT help the UTI problem. c) giving him ALL of his water overnight means going back to changing diapers a few times at night. No thanks.
And before you comment or whisper among yourselves – yes, he’s in feeding therapy. His therapist is awesome. She wasn’t surprised he stopped eating during his last hospital stay and she isn’t surprised that he’s taking the long road back to where he was. I haven’t told her our plan (we haven’t seen her for over a month, just with weird schedule things), but I suspect she’ll wish that we would keep at it with the feeding him. And that’s fine, because she only sees that part of the picture.