Today was yet another dead end. Not the way I had hoped to spend my 3 year wedding anniversary. I tried y’all.. I tried to be optimistic. Tried to think that we’d get answers as to why Parker isn’t eating and a doctor who’d be willing to go farther to figure out the reasons.. but no.
It’s not to say the new doctor isn’t knowledgeable, or wasn’t nice.. she was both of those- but it was yet another day of “Just keep doing what you’re doing and eventually he should regain his appetite” appointments. The kind I hate. It’s been WEEKS and he’s yet to eat more than 50% of his intake on his own. She checked his breathing, perfect, no congestion.. he’s gained over a POUND (thanks to our force feeding).. so all doctors want us to do is what we’re doing- and that’s just not good enough for me.
She even wants us to go to the Cystic Fibrosis screening.. wait an ENTIRE month, possibly a whole month more of force feeding and wait for those results to MAYBE move on to see a GI specialist if he still isn’t eating by that point. Even though, she knows for a fact that when he was born (as well as any baby born in the state of Virginia) he was screened for CF and the test was negative.. so IF he has it (which he doesn’t, and I don’t think she thinks he has it either)- he would have had to have CONTRACTED it, and only 30% of all those who have CF have contracted it.. that’s a tiny number.
The reason they are insisting on the sweat test is because of the weight loss and the breathing complications.. ok, I get that- but those with CF don’t gain weight even when they DO eat large amounts..obviously not the case here considering his HUGE weight gain in the past 2 weeks now that we’re forcing more into him. And there are NO breathing problems anymore..
I just don’t understand why we can’t pass on it and move on, it’s SO obviously something else.
With our insurance plan.. technically we don’t have to sit around and wait for these morons to do the CF screening. We can bypass all of them and make the appointment with a GI specialist ourselves.. and if I have to force feed him for another week (making it 5 weeks of force feeding), that’s going to be the route I take. I seriously can’t wait around for them to finally realize I was right all along and THEN move on and have my baby suffer for that long. It’s unacceptable to me.
And even worse is that now Holden is REALLY starting to become effected by the whole thing. He had finally adjusted to having his brother around and the attention that has to be split between them.. but with this sickness- Parker gets even MORE attention and the only way for Holden to lash out and show his frustration is by shitting himself. Multiple times per day. he even pooped in the shower tonight which he has NEVER done in his entire life. I try to make as much time as possible to give him alone time with me during the day, but it’s just not enough with all the time I spend force feeding and trying to make sure all that forced formula stays down.
This needs to end. Now.
I’d be MUCH more livid had Parker refused the bottle I fed him when we got home from the doctor after 3 hours of not eating.. but he inhaled 5 ounces all on his own with no breaks. Of course, then he slept for 3 hours and only ate 2 ounces when he woke up and I had to force over 2.5 more into him just to make sure he came CLOSE to his consumption yesterday to continue his weight gain- but it was better than 2 refused in a row. And he hasn’t eaten that bottle on his own without force in a VERY long time.
It’s clear that we’re still nowhere near being over this hurdle. He isn’t just going to wake up tomorrow and go back to eating over 5 ounces every bottle without force. That isn’t going to happen, and I have no pipe dreams of it happening. And after so long of being force fed I don’t agree with the doctors that he’s magically going to regain his appetite one day. It hasn’t happened yet and it’s been over a month- I still think there’s something else going on that’s being ignored just in favor of this stupid ass CF screening… and it pisses me off to no end.
I’m done waiting around and being the only one (besides Thomas) trying to fix my child. Unfortunately NONE of the research i’ve done on his symptoms have come back with anything even close to an answer, or even anything similar. It all pops up with “reflux!”- yeah, I know he has reflux.. and I know what a reflux baby acts like when they’re refusing a bottle.. seeing as Parker used to do that- this is not the same.
There has to be SOMEONE out there who’s been through the same thing.. who’s had a baby with the same symptoms. Ate just fine, got sick.. stopped eating, never started eating again. Parker can’t be the only one. And now i’m more determined than ever to find my OWN answers since no one else is interested in doing so.
I am weak pic.twitter.com/LYdRQ6EZcC
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