Ya know when someone says something to you, and you feel like someone just punched you really hard in the gut? Ya, that's me. Been feeling that way for like a week now, only yesterday it got worse.
First gut punch. Little Man's appointment with the GI doc last Friday. He has now lost 10 pounds since the medicine debacle. He is still refusing his formula, still not eating enough to keep his weight up. We are just dang lucky he had some extra pounds to lose, because it is stretching out this inevitable part of his life.
Here is the news from the GI. And it was a horrible appointment. (Not Little Man though, I made sure to give him two of his happy pills before we went and he was such a good boy!)
GI:Mrs Tangled, we don't have any good answers here.
Me: I don't either!
GI: He either needs to eat or drink his formula
Me: (grinding teeth in frustration) Don't you think we are trying?
GI: Can't you fortify the calories he is getting?
Me: How in the world do I do that when he eats so little? It's not like I can just put peanut butter on it!
GI: What about his formula? Have you tried anything else?
Me: We can try again, but we have in the past. You do realize this has been a lifelong problem from infancy?
GI: Can you get him to poop more? Maybe his gut is so full that he isn't hungry.
Me: I asked you to do an xray last month to see if gut was too full, but you said no.
GI: Ignoring me completely and yelling out the door, " Mom is agreeing to an x-ray!"
(have I ever said no? And they still haven't called me back)
GI: A feeding tube is not a good option in his case with his immune problem
Me: (head exploding) Don't you think I already know that? What do you think we can do about this??
Bottom Line: 8 more pounds lost and we can no longer put off the feeding tube issue.
He will either face a certain slow death by starvation or possible death by infection and really? Both those options suck! He is currently losing a little more than a pound a week.
The second gut punch:
Bald Man turns to me yesterday and says, "Little Man was having seizures again this morning".
We had less than 8 seizure free weeks. I can hardly breathe.
Thursday, December 07, 2006
Gut Punch
Posted by
Jo
at
9:36 AM
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8 Kids Who Want To Play:
Oh, Jo. That just sucks root. I'm keeping my fingers crossed that you get some GOOD answers and a doctor that actually listens. ((hugs))
Oh my goodness, Jo. I wish I knew something to say, or some advice to give. Just know that I'm saying a prayer for you guys, and thinking of you.
I dislike your doctor. I wish you had a doctor that is obsessed with the problem until it's solved. This indifference is crap!
But Jenny, he is just one more drug affected brown child. Wouldn't it be better for him to be gone and decrease the surplus population? (To quote Ebenezer Scrooge)
No, no, NO! None of this "decreasing the surplus pop." thing!
I'm teaching Noodles' Christian Formation class this year, and I said to the kids the other night, "If you only remember one thing from this year, I want it to be that EACH and EVERY person is made in the image and likeness of God!"
Prayers going out for you guys.
OMG - that's really awful, both the news about Little Man's health issues and the idiot doctor. How incredibly frustrating for you!
I bet that I am more vague about my religious beliefs than Jane, but I fully agree with the sentiment of her post, that each and every human being is valuable and precious. It is so disheartening that so many people do not stop to think about that.
Methinks some people are overdue for a visit from the three ghosts of Christmas...
Oh, no! And you were being so nice about me freaking out about kid stuff, and...yet more proof that I am a worm as if that was at all necessary.
We know that a G-tube would become a gigantic infection site, but (all practical issues aside) would an NG? Obviously there a potential for sinus issues and an aspiration hazard IF it is yanked mid-feed and of course it would probably take either heavy sedation or a pole snare to implement and he would not enjoy it, but I wonder if they could (as a reluctant not-first resort) sedate him really heavily while they a) pumped him full of his formula like a veal and b) tried to come up with some better way of chilling out the seizures. And, you know, got his various meds straight, maybe. Preventive maintenance on these buggers is hell, isn't it? Has a speech pathologist looked at his swallowing at all since the drug debacle? Has an otolaryngologist checked his vocal chords and epiglottis for any sign of partial paralysis...I'm grasping at straws here but is he on anything currently for reflux?
I totally agree with whoever said you needed some rockin' doc to become totally obsessed with getting Little Man straight. Like a TV doc, complete with mad diagnostic skills and dark, brooding good looks. I mean, you know you'd be waking up to such a doc with your dogs falling off the porch (yes I'm talking about what you think I'm talking about) under your t-shirt and an arse-eating recliner having its way with you for potentially quite some time, so why not? Maybe he could also sweep Princess handily off her feet. You and Little Man deserve all of that. Please e-mail me with a physical address where I can send you something when you get a chance.
Jo! GASP!
Omgigoodness... here you have been so unbelievably giving and supportive of me and here you are going through THIS!
Jo... Jo... it is absolutely UNFORGIVABLE that your Doctor is treating you like this!!!
I'm horrified...
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