A friend of mine posted these words for me today as I prepared for C’s follow-up appointment with the GI doctor:
Just remember there is no more powerful force in the world than a mother fighting for their kid. You might feel defeated or like there are no other options, but you’ve gotten this far. Keep pushing!
Thank you, sweet A. Your words meant so much to me this morning as I sat with my two children in the exam room and listened to the GI doctor say, “I’ll see you in 4-6 months.”
I haven’t updated too much about the drama that has ensued since C’s G-tube was placed. It seems like so much has been happening daily that it’s impossible to keep up with. The short story: we realized that C is experiencing terrible reflux. He was waking up multiple times at night, crying and screaming inconsolably. We could almost always smell Pediasure on his breath even though he wasn’t drinking it orally. He was smacking his mouth like he could taste something, swallowing hard and he’s becoming very aggressive. Something’s wrong.
I contacted the GI doctor last week to tell him all of these things. His answer? Feed him at 8am, 12pm, 4pm, and 9pm. Brushing his teeth will help you not to smell the Pediasure on his breath.
So I called C’s pediatrician and he prescribed Zantac after he heard the symptoms – without even needing to see him in the office. In his opinion, it was pretty clear that C was experiencing reflux that required treatment. His pediatrician doesn’t want to have “too many cooks in the kitchen,” but said that if a barium swallow test wasn’t ordered by the time he sees C again in October then he will order it done.
Over the holiday weekend, I decided that I wanted to call and switch doctors. C had originally seen a GI doctor that had wanted to do further physiological testing, i.e. an endoscopy. I think we were switched to this GI doctor, who placed the G-tube, because he travels closer to where we live. Quite honestly, I’ll drive wherever the hell I need to drive in order for my child to get proper medical care and he sure isn’t getting it from this guy.
On Tuesday, I left messages via all of the numbers I have for Children’s Hospital GI clinic. The attachment at the end of C’s tube fell off. I could not reach ANYONE, so I went to our local ER and they taped it up as best they could. I left some more messages. No one has returned my call about switching doctors (even though I was told from central scheduling that someone would contact me within 24 hours). One person contacted me late yesterday to ask if we could wait until today for the tube to be fixed at his appointment. I said yes.
Well, guess what? They didn’t have the attachment today at the office. Why am I not surprised? They’ll be having it mailed to either me or the local office and we can come in and have it fixed. Another appointment – awesome.
The GI doctor today said that the area around the tube was healing well (yay!). He wants us to see the feeding team and schedule the surgery to have a button placed instead of the tube (done and done). Will he be doing further testing regarding C’s reflux? Nope.
Never mind the fact that C has been doing better since we started the Zantac last week. Or that doing his last feeding by 5:30pm has reduced his reflux problems at night. Or that propping him up in bed has drastically improved his quality of sleep. Or that he slept THROUGH THE NIGHT last night and I can’t even recall the last time he’d done that.
Nope. He said, lots of children experience reflux and we don’t treat it unless there’s esophageal damage. They didn’t see inflammation or damage when they placed the G-tube.
Okay, well do lots of children wake up screaming multiple times at night? Do lots of children improve drastically while on Zantac if they don’t have reflux? Do lots of children STOP EATING and we don’t know the reason why? Don’t you think you want to investigate that a little further?
Nope. We have our appointment on October 30 with the feeding team. Have C eat at the table with us. He’ll get used to the feedings and he’ll start to eat better on his own. Go back for our next GI appointment in 4-6 months.
Bull. Freaking. Shit. I’ve never experienced a doctor who just doesn’t LISTEN to what is going on. This is my child. I am with him 24 hours per day. I know what the heck is going on. He had reflux as an infant. He has never eaten well. He had colic as a baby. He was a high needs baby. He has never slept well. He has stopped eating. Now we’re force feeding him and he’s miserable. Zantac is helping him. HELLO?!
Meanwhile, I have lost my voice from the cold that we’ve all come down with, so I can’t even call again today about switching doctors. Not that I’d be able to talk to a live person anyway. If you have any tips about getting someone to help us, please share!