Sunday, March 6, 2011

So does this mean that Natalie will have "nacho cheese" coming out of her too?

A few days ago, I get a text from Rick:

".. and also, James just coughed up some nacho-cheese-colored phlegm.."

Aren't our texts just the hottest thing ever???

All I could think of were those fake cheese dispensers at 7 Eleven.. and also, every convenience mart out there that sells hotdogs and/or nachos.
I ate quite a bit of that stuff years ago when I worked at a gas station for 2 years. Hey I was like 18. You can SO get away with eating that crap when you have the metabolism of an angry gorilla.

I digress. Also, angry gorilla?

So how is Natalie? Natalie, is doing pretty well today. We started the day with a mad scramble to get some oxygen delivered. So, I sat in the car on my way to work calling them and this awesome new oxygen company that we have now (the one we had switched over) and they delivered a clean and awesome O2 condenser.
That brings back memories of last January. It's one of my least favorite white noises.. I hate it for a few reasons, the obvious being that Natalie has to be attached to it.. but also because the actual sound is really soothing.
At around 11am this morning Rick gets a call from Children's Hospital saying that they have an official diagnosis on top of last night's official and very vague diagnosis- RSV.
RSV is not anyone's friend and from what I've already heard from some friends is that it's really unpleasant whether you're a "heart kid" or not. RSV is why Natalie received 2 monthly shots for the past few years.
This would just so happen to be her first year not having to get the shots.
The doctor that Rick spoke to today said that because she's coping so well that a nebulizer treatment to open up anything would actually do nothing for her. Natalie has coughed up a good amount of nasty globby phlegm and they love to hear that. If she hadn't, then yes a nebulizer treatment would happen.
Unfortunately, if the patient is coping well, there is nothing they can do for RSV except watch and wait. So for now, Natalie will see her cardiologist tomorrow (not sure yet, it's being scheduled tomorrow morning and she's listed as an immediate squeeze in to see the doctor) and they'll do a good once-over and tell us where to go from here. How long will she need the O2? How much O2? When can she return to school? etc etc etc.
Natalie was actually due for her 6-month heart checkup for the later part of this month so maybe they'll do an echo? or an EKG? I'm really not too sure. They'll probably want to do another chest x-ray especially since this virus causes pneumonia. EEk.. pneumonia.
But again, so far... so good.
Natalie even tried to ride her scooter in the apartment today. So, she must be making a huge turn for the better.
When she has to wear the cannula in her nose she turns into a different kid. She's sad and irritable and really depressed. She won't drink anything..won't eat anything. When we give her a small break? She's happy, hungry, and thirsty.
Like I've said before....


Last night I kept telling Rick (and good 'ol Facebook which I'm sure you Facebook buddies loved) how something was nagging at me. Something just was NOT right. I wasn't happy with such a vague diagnosis, no treatment really of any sort, and the fact that they didn't care at all that her brother was just diagnosed with bronchitis. Not only did it all click when I got the text about RSV, but I realized something... they should have given her antibiotics as a precaution for her heart. Not for fun. Not for wasting. Not for just making the parents happy because they are annoying and wish and hope that it's bacteria-related and not viral (which makes no sense)..but because the antibiotics should have been given to protect... her HEART. They throw around antibiotics when she has to get her teeth cleaned. That's all I'm sayin'. 
The hospital could have done this.. could have done that.. blah blah blah. Hey, I love that hospital. But I am just sort of still in shock that they didn't come out and say "look, we don't know what's actually wrong with your daughter.. let's give her antibiotics until the lab comes back tomorrow.. let's protect her heart." 
Natalie's lungs are already compromised. With RSV, she is double comprised. 
Will she be okay? You know it. 
Is there some sort of risk for danger here? Unfortunately, yes. But, that's what I'm not thinking too much about right now..which is why I'm letting it all out on this here blawg. Just getting it out. 
Once again, despite how scared shitless I feel, Natalie will continue to kick ass. 
And that? is the last I'm going to say about yesterday's experience with the ER because I'm just going to drive myself crazy. Tomorrow we will get more answers that actually help. 

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