Thursday, February 10, 2011

Tests

I had an interaction today that I'm still sort of processing through. I had to go to my PCP for an exam and tests. I've been fighting a stubborn UTI. I really like the nurse practitioner in the office, but she asked a question in a way that I get quite frequently. I'm never quite sure what to make of it.

Inevitably, someone asks a question which leads to me needing to tell them about Robbie's early birth. Today it was because of a discussion about my kidneys, obviously because of the possible implications of my bladder issues. She asks how early he was.

Me: 26 weeks
NP: Oh, that's early!
Me: Yes, quite.
NP: Was he in the hospital a long time?
Me: Yes, 96 days in the NICU, and a few stays beyond that.
NP: But he's good now?


And this is where I stumble a bit. This interaction happens probably at least monthly with one person or another. They never seem to ask "how is he doing now?" It's always "But he's good now?" or "But all is well now?" As though the only acceptable answer is yes. You would think that by now I'd know how to answer, but I don't.

I usually stutter "Yes! Well,  I mean, he's getting there, but he's awesome.. yes.." They usually want to know why I qualify it, so I explain that he's had a lot of issues and we still struggle with feeding. They inevitably shrug dismissively or say something about kids not eating. I say yes, we hope to get rid of his G-tube soon. Perhaps I shouldn't add this, but I don't appreciate the dismissive tone. They look at me pointedly, realizing that when I say "issues" I mean issues.

And then they change the subject. Whether that is because the conversation has produced the information they sought or because the notion of issues made them uncomfortable is never quite clear.

I just don't quite understand why the question seems to always be seeking reassurance that all is well. I mean, I love our life and think Robbie's freaking awesome. But I also recognize that a tube-dependent 2.5 year old isn't exactly typical. I realize that a lot of people, even medical professionals, don't realize the impact of prematurity at the level we've experienced it. But it honestly doesn't matter. Sometimes kids struggle. It's not ideal, but it's reality. Whether it is prematurity, or a genetic condition, a trauma of some sort, a developmental disorder or something else, not every kid is "all well." And when the question is asked that way, I feel like it sets me up to disappoint them somehow. It makes me uncomfortable.

I can't even really qualify why that is. I mean, sometimes I'm disappointed. I wish Robbie was tube-free. I wish Robbie didn't have to have therapy 2 to 3 times a week. I wish he would outgrow this blasted corn allergy. I wish he was as physically adept as his peers. Sometimes when I'm directly confronted with one of his peers who is clearly light-years ahead of him in speech or another area, I am sad. I'm never disappointed in him, but the situation that has lead to this still gets me down occasionally.

Surely other people should be entitled to feel that, too. Logically, I know people want to hear the happy endings. I feel like we're living one. Or, maybe more of a happy journey, but I know it's a new kind of happy that most people have trouble imagining. But every time, I find myself leaving the interaction with a mental head scratch. Why do they ask this question? And did I answer it correctly? Did we pass our tests?

Trish

9 comments:

Sarah said...

I lurk in your blog, but had to respond to this one. I have preemie twins, born at 30 weeks gestation due to PTL. I was on bedrest for 10 weeks, and luckily managed to keep them in for that long with the help of a lot of drugs. They are now 14 months old and, very luckily, seem to have no adverse health consequences....although I know we are never truly out of the dark and as they get older we may see some behavioral issues that just can't be seen yet.

I get that SAME response when I mention their early birth and NICU (2 months) stay. "but they're ok now, right?" I usually just say 'yes', but often wonder what I would say if there were more obvious and lasting issues (like a GI tube).

People don't want to hear bad things. I got that often when I was on bedrest: no one talked to me and when I was honest about how I was doing, people would clam up and change the conversation. 'Those' sorts of things happen to 'other' people.

So no real answer...just wanted to say that I get the same response and haven't figured out the best answer either....

mrs.spit said...

Try:
"But your baby is ok now?"

Me: "No, he's dead."

Searching said...

What a weird question! I hope I never asked anything like that before I was an RN. I don't think so, not something I ask ANYONE. I expect there to be something wrong w/everyone. Still, I could see how other ppl just want to label it as black and white, either fighting for his life or fine.

Have you ever just said "No, even after 2.5y he still struggles with many issues, lots of developmental delays so he still has therapy 3x/wk and has really big issues with eating due to his prematurity. He doesn't eat much food, mostly formula through a tube in his belly. Problems from prematurity last years, some their entire life."

Might freak them out and they run from you, might open up some dialog about prematurity, and maybe they will think about it next time they meet a preemie.

Anonymous said...

I think people just feel better if they know that everything is "ok"
Basically fully loaded harmless question designed to make themselves feel ok and not worry.

Amy said...

Gosh. I really wish people would just ask, "how is he doing now?" I know they don't think it through ... my counseling background has trained me to ask questions in a less leading way (though that training doesn't always kick in during normal conversation ;)). I can see why you're still processing that and figuring out how to answer.

Azaera said...

Yeah people ask me if Skyler is "okay" now and I pause too, how do I answer that one? He was born preemie, and he's fine aside from being small when it comes to being born early. But then I wonder do I mention his visual impairment or his hormone issues?

And when I do, I always then have to explain that no, his prematurity had nothing to do with that it's a separate issue altogether. Is he okay? I'm not sure, it depends on the context. I think he'll still be a happy person, but he's not typical nor is he like every other kid in the sense of the word "okay".

AngelsAmid said...

Robbie is awesome. Regardless of his issues he's always been "GREAT" :)

Trish said...

Thanks to everyone for the validation. I'm glad it's not just me. It just seems such an odd thing to ask. If you know enough to know he might have complications from his early birth (many people don't) why would you just assume that he doesn't?

Maybe I should just chalk it up to the fact that I seem very happy with things (because I am) and they think that must mean our lives are very typical.

Anonymous said...

I can relate, pretty much completely. My 2.5 year old ex-26-week preemie son is tube dependent, as well. I receive the same comment regularly. Or, they look at him and say, "Wow - he's doing GREAT now!". Yes, he's adorable. And he is an incredible boy! And I couldn't love him any more than I do exactly the way he is! But take a peek under his shirt and you'll see how he is fed (aside from the 5-6 bites of foodhe may or may not take each day). (And please, no comments about how "he'll figure it out one of these days...") Take a gander into my bedroom at night and you'll see him plugged into a feeding pump that feeds him a little bit every minute, all night long, because he only tolerates 2 ounces at a time during the day. Take a look in our guest room where the oxygen tanks and O2 monitor sit, just in case we need them again (as he did 24/7 his first 17 months).
I, too, am never quite sure how to respond to that question...