Our IDC from the CDC called me late yesterday afternoon to discuss more at length about what has been going on in regards to Dinky. She mentioned that she had spoken to our OT about the upcoming G-Tube and our OT seems to be almost against it, stating that we should be going in for a proper feeding study and assessment before taking such a drastic measure and feels we should push back against our Ped's wishes because a Gtube could cause oral aversion. Meaning Dinky will learn not to take anything by mouth or have a huge fight against it.
And I understand her concern because as his parents, Husby and I have the same concerns as well. But let me break it down like this.
Since April 29th, he has been on 10 day antibiotics. Twice. Meaning that in the last 5 weeks, he's had 20 days of medication to help clear his lungs out and try to hold them off from developing into something much worse than slight aspiration. Pneumonia is a very common problem for children that aspirate formula. Why? Because formula (or most of it anyway) is dairy based and all formula contains fat. Thus, if dairy or fat or both get into the lungs and is allowed to settle even for just a few days, pneumonia is more commonly the result from that.
Dinky has been on 20 days of antibiotics. For that reason.
A NG is a tube they stick into your stomach by way of the nose and down the back of the throat. They're irritating. It makes swallowing uncomfortable. It makes breathing uncomfortable. Even the simple taste of sucking on fingers is annoying thanks to the flexible tube jammed into your face. And let's face it. They're super easy to rip out. Remember when Dinky had RSV and he had an NG for a week? He pulled it out. 5 times. That's 5 times he had to go through the procedure of having someone hold his head and having another person quickly and deftly slide the tube up his nose and into his stomach. Not to mention a NG tube comes with a LONG tail that gets tangled up, stuck, caught up on things and is super easy to hate.
A Gtube is a tube they surgically place directly into the stomach so that you have a small button externally to hook the extension up and feed. Once done, you remove the giant trail of tubing and this allows for greater freedom to be carried, cuddled, roll around, bathe...play. But it's a small surgery. It's a scary thought that someone wants to go and place a small hole into our child so that he can eat.
OT doesn't seem to understand this.
So. Watch this.
April 24th, he was 6.91kg.
April 29th, he was 6.64kg.
April 30th, he was 6.65kg.
May 1st, he was 6.74kg.
May 4th, he was 6.77kg.
May 9th, he was 6.88kg.
May 14th, he was 7.04kg.
May 20th, he was 7.18kg.
May 25, he was 7.1kg.
May 27th, he was 7.02kg.
See that weight loss? That's 6 ounces in a week. Lost. Again. I don't even want to take him in to get weighed. I don't want to see what the scale has to say. I have now become a giant baby putting him on the scale. Hopefully Husby is home on Thursday when our Ped is in office so I can call him and let him know what his weight is doing. Can I just stomp my feet and throw a tantrum like some over-tired toddler that has so many emotions that they just explode because they don't know how to deal with such big feelings?
That's what I feel like.
I have a toddler. Trapped in my head. Screaming and crying and having a full blown melt down every time I think about this Gtube. Toddler me is sitting there wailing, all snot faced and sticky, tomato red with anger and frustration. And there's adult me, in my brain, sitting at a table going "Oh, hush you giant annoyance. It's just another thing to add to the list of already overloaded things to do. We'll deal and cope. Because that's what we do. We cope. We deal. We learn. We will survive this." Then there's toddler me, screaming even more because that's yet another thing that we will have to learn. And do. And clean. And have to watch.
It's like there's a party of responsible and irresponsible warring in my noggin. And as always the adult side wins. Even if I do want to throw things around, stomp my feet, scream and cry. Problem is, if I start crying I'm pretty sure I won't know how to stop. So I cope. As I always have. I have this tendency to just accept things as they come, stand up under the weight of this and take charge.
Even if I want to poke it.
In the eye.
With a spoon and go neener-neener-neeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeener you're a silly wiener.
Mature, right? I'm talking about the adult part. Anyone going neener-neener isn't exactly in top adult form.
So let me assure you that in no way at all, are we actually going into this without fully thinking this through. We know exactly what's going on. We KNOW. We've weighed the pros and cons.
We aren't dumb. It's scary as hell. But we'll do this. Like we do everything else.
No comments:
Post a Comment