Monday, April 4, 2016

Week 137: Love/hate

I think it's fair to say that so far I have a love/hate relationship with the G tube.  On the one hand, I love what it's done for Lemon's health.  At our surgery follow-up on Friday we learned that he has gained 4lb since it was placed--that's a half-pound a week, putting him at the 50th percentile for body weight for his age.  By far the highest percentile he's ever achieved, and we haven't even reached our goal of delivering 3 cans of Pediasure 1.5/night (we're close, though, at 2.5). I love how much energy he has now, even when he puts some of that energy towards a category of behaviors that I will refer to as "being 2." I also love that we can give Lemon his liquid medications through the tube.  It's not often as a CF parent that you can take something _off_ the list of medical things your child has to do every day, and thanks to the tube we can tell Lemon that he doesn't have to take the medicines he doesn't like by mouth anymore.   

On the other hand, I hate just about everything else about the G tube.  I hate having one more thing to worry about.  We stopped antibiotics on Thursday, and so far so good, but of course I'm watching like a hawk to see if the infection comes back.  The nurse at our follow-up thought the skin around the tube didn't look totally healed yet, so I'm spending more of my day than I would like cutting little custom dressings to go around the tube, taping them together, and checking to see if they've fallen off yet thanks to Lemon's active lifestyle.  We're always worried about the button snagging on something.  I'm always keeping an eye on the clock during dinner to see if it's time to start pre-digesting the Pediasure yet.  When Lime wakes me up during the night, I'm always checking the clock to see about how long it is until Lemon's feed will be done and I have to get up in the dark to stop the pump and flush the tube.  I know it's a little thing, but I hate how it looks.  I hate how there's a weird plastic device popping out of my otherwise perfect-looking little boy.  I also hate how his skin, like mine, is sensitive to every medical adhesive ever invented and so his stomach is covered in the red marks of adhesives past.   I also hate having an IV pole in his bedroom.  You'd think I'd be used to medical equipment in his room, since there's a lot of it and it's been there a long time, but there's something about the IV pole next to the bed that really gets me.  I'm sure we'll all get used to these things with time, since it's only been two weeks, but I feel like it's occupying a lot of our thoughts right now.

In other news, Lime got his second tooth and is working really hard on a third.
I took Lemon to his first-ever birthday party of a friend from school.  He had a great time.  You will be surprised to learn, based on these photographs, that there were about a dozen other children present at this party.  None of them shared Lemon's intense fascination with the toy space shuttle, however.

With all the weight he's been gaining, Lemon started to outgrow his old clothes, so I went on a little shopping trip for him and came home with his first-ever pair of jeans.  I cannot begin to tell you how excited he is to have jeans "just like Daddy."  I fear that there may be a situation tomorrow morning when he discovers that they are in the laundry basket and not in his drawer...

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