A better use of my time today would have been sitting home with my kids, relaxing, and watching my soap. May not sound productive to you, but it is a hell of a lot better than when I actually spent my day doing.
Even though I found it absolutely pointless- our pediatrician insisted we still go and see the pulmonologist (yeah, the one that refused to see us on Friday because his breathing rate was no longer high enough). Back when Parker tested negative for RSV but was still ‘mysteriously’ sick, I was all for it. Nothing was making sense.. so further testing seemed necessary.
But then, surprisingly, he tested positive for RSV- and everything seemed to be answered. No, he didn’t have RSV at first (just as I said repeatedly), but being sick as an infant can cause RSV (90% of all infants get RSV before a year old. Guess Holden was just incredibly lucky he never did). And RSV is a stage 5 clinger. It just doesn’t quit. While most babies are sick from somewhere between 7-14 days, sometimes it can continue for 3 weeks, and can take up to six to FULLY clear up. We’re still in that window. While I HATE that he has been sick so long and is losing weight, all I keep being told is that it’s “normal” and to keep him hydrated and eventually it will work its way out of his system.
So against better judgment, I drive me and the kids all the way across the water in INCREDIBLY windy snowy icy conditions to the Childrens Hospital.. whom for the record I have lost all faith in at this point. After a waste of time with Holden’s GI testing that all came back negative, and the horrendous ER experience last week when we were sent packing after 3 hours of waiting to see the damn pulmonologist and were refused… It just doesn’t seem worth it to even attempt to go there for answers anymore. We never get any. It’s a waste of time, effort, and money.
Thomas met us there, because I had this awful feeling i’d be in a place i’m completely unfamiliar with, with 2 bored irritable children for hours and hours with no help. I wasn’t far off. We sat in that damn room FOREVER, nurses in and out running tests (all came back perfect), and then a med student asking us ridiculous amounts of questions of what exactly has been going on. Shouldn’t they HAVE that info? The practice we go to regularly is a branch of their hospital, they should have DETAILED records of what has been going on for the past 6 weeks. They should know the medications and diagnoses.. but no, they knew nothing. So I had to painstakingly relay every single bit of tedious information.. while he fucked it up and had to ask again.. only to relay it to the doctor who took forever to get to us only to ask the SAME questions again.
And of course, we were told everything we already knew. Duh, he has RSV. Duh, he’s still within the ‘normal’ window of sickness. The only thing the pulmonologist did for us that was helpful was to prescribe a nasal spray to MAYBE break up some of Parker’s congestion so he can finally eat, because she thinks that the reason he isn’t eating is because he can’t breathe when he tries. Which makes sense. Babies are nose breathers, so if they’re sucking something through their mouth and can’t breathe through their nose- they’re obviously going to stop eating to catch their breath.
And just as I thought we were being sent on our way.. she decides he needs to come back in a month to be tested for Cystic Fibrosis.
How in the living HELL did we go from RSV to CF? How would she even come to the conclusion that he needs to be tested for that at all? The symptoms don’t match at all. He hasn’t been wheezing since birth, he doesn’t have a huge appetite with no weight gain, there’s absolutely NO family history of CF.. and his test for RSV came back positive, so this isn’t some strange sickness that has been plaguing him with no answers for his whole life. It’s been ONE sickness. ONE time. Cystic Fibrosis is not something a doctor should just throw out there. It is FATAL.
MAYBE if Parker’s RSV test had come back negative the second time I could see the need for the test, maybe if he hadn’t CAUGHT this sickness from Thomas, if Holden hadn’t of been sick.. and his illness was an absolute mystery that had been going on for months and months..
but that’s just not the case here. Not to mention he has had TWO chest Xrays that were absolutely perfect and that would not be the case if he had CF. DUH.
I’m not happy. I don’t need more things to stress out about. While I am almost positive that Parker does NOT have cystic fibrosis and this test is completely unfounded- there’s always that little tiny voice in the back of my head saying “what if?” and I HATE that voice.
So now we have to go BACK to that stupid place in a month, get the testing done at 9 in the damn morning, and then wait around until 11am for the stupid pulmonologist to check him again. Another waste of an ENTIRE day for absolutely nothing.
I’m sick of it!! Sick of the sickness and STUPID diagnoses, and CONSTANT follow ups that don’t ever help.
Seriously, are they just trying to scam more money out of our insurance at this point?
The kid has RSV, what you SHOULD be concerned about is his damn weight loss. He’s down to 13lbs2oz from 14lbs10oz.. maybe you should be looking at that instead of CF. Bunch of morons.
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