Just chalk today up as another win for the good ol’ saying: “mommy knows best.”
Just like I told the doctors it wasn’t RSV in the beginning and I was right (I believe it turned IN to RSV from being forced to sit in sick waiting around other babies with RSV and croup. Thanks a lot), I insisted all along that Parker didn’t have cystic fibrosis, and guess what?
Yep. I was right.
I probably should have taken it as a sign when the nurse who performs all the sweat tests said “Yeah, you’re insurance probably made the doctor tell you to take this test. Just to rule it out. He doesn’t look like he has it, he doesn’t look frail. Most kids that come in here and test positive look frail.”
An eyebrow was definitely raised. Not that i’ve never heard of insurances being stupid twats and just ordering ridiculous tests for really no other reason than money (’cause I know we’ll be getting a bill in the mail for that). I think insurance companies are shady pieces of crap to begin with. It just never makes me happy to know we had to wait for SO long for this test just because our insurance is full of greedy bastards.
The test itself really wasn’t all that bad, or traumatizing. Tape some electrodes to the kid’s arms. Push a button, when that one is done, turn the other one on. Then tape it up, put a hoodie on them, zip it up, wrap them in a blanket- and hope they sweat enough to perform the test. Enough sweat was a big concern for the nurse since Parker decided to upchuck his bottle VERY early this morning (earlier than usual, I swear he could sense we were going to wake him up)- and trying to feed him in public is a shit shoot. Only ONE time has he ever eaten decently away from home, so needles to say- he didn’t have much in his stomach, which meant he might not sweat.. which meant we might have to RE-do the test.
Uhhhhh.. no, driving another hour, waiting however long, doing the 30 minute test AGAIN, another bill in the mail for labs because our insurance hates babies? Pass.
So the half hour wait between electrode stimulation and sweat collection we spent trying to get him to eat. Trying be the key word. Not so interested. I think in an hour, and many attempts, he got down about 4 ounces. Better than I expected taking past experiences into account.
Sure enough, his arms were dripping with sweat. And the shocking part? She said she’d have the results by the time our pulmonologist appointment came -in an hour and a half. Ugh. Keeping two kids happy for an hour and a half in a hospital is not fun times.
The Children’s Hospital is smart though, they have this weird bubble contraption in their main hall. Both kids were completely obsessed. I couldn’t look at it or it made me nauseous.
Finally, the pulmonologist appointment comes along. First thing she tells us is that the test was negative. I did an arm pump. And then she says “Yeah, I didn’t think he had it unless it was the most acute case i’ve ever seen., but we had to rule it out.”
GAAAHHHH, that’s a punch a wall moment if there ever were one.
Then she asks how he’s doing, and when I say his breathing is bad again and his cough has returned she looks puzzled. Yay, another puzzled doctor. Color me shocked.
We explain the whole situation, the symptoms, in painstaking detail.. and somehow she comes to the conclusion that she thinks it’s his reflux.
I CAN see how she made the correlation.. because it seemed that as soon as his appetite returned, his cough came back.
BUT- I consider myself a guru of sorts on reflux. Two kids with it? One who went through 3 medications and another who went through two? I’ve done a hell of a lot of reading and have a hell of a lot of experience. I know what reflux pain is like, especially while feeding- Parker doesn’t have that. His dosage seems to be just right.
But whatever, she gave me some other reasons as to why it could be reflux, and while I still don’t really agree- i’m not a doctor. I don’t know as much as a doctor, and I haven’t been to med school. And I sure as SHIT don’t know what is wrong with Parker (my best guess would be RSV again, as he has the same symptoms) so I just have to trust in the fact that she knows a better next step to take than I would (if I had any idea of what to do next).
Upping his prilosec dosage won’t hurt him, as it’s according to his weight. It’s worth a shot.
We also got put back on both inhalers, even though they didn’t help the first time. Whatever. Not gonna hurt him.
So we’re to try the upped dosage of prilosec (although she wrote the damn prescription wrong, it actually is a SMALLER dosage, so she’s gonna get a call tomorrow because we realized it too late in the day to call and ask) and the inhalers.
If THAT doesn’t work, we’re to switch to prevacid (another reflux medication, which doesn’t have to be compounded by a pharmacy and can’t be messed up).
If THAT doesn’t work, and this is the worst part, we’ll have to take Parker back to the Children’s Hospital and he’ll have to be put under anesthesia and have a camera snaked down his throat (I think she called it a Bronchioscopy?) to make sure he has no abnormalities or blockages causing the breathing problems (his rate was once again increased today, from the normal 30 to about 55).
When I heard anesthesia, instantly my eyes welled up. The thought of my baby being put under, even for something so simple and basically harmless.. freaks the shit out of me.
So yes, I HOPE it is the reflux. OOHHH man do I ever. That doesn’t mean I think it’s the reflux, unfortunately I don’t. I’ll keep my fingers crossed and try to stay positive.. and just wait it out and see what happens and hope it doesn’t come to that.
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