Whew!

five days since blogging
I'm not sure how that happened
oh, yeah, FML

Whenever we have a bad week around here, I always think, "Well, it could be worse." And it could be. It has been. So I have to try to put things into perspective. But you know, there are levels of shitty. Like the Homeland Security Terror Advisory System. Only it's the Uh-Oh, Watch Out, Shitty Week Advisory System.

In the Uh-Oh, Watch Out, Shitty Week Advisory System, blue is the worst and red is the best.

    BLUE: Blue baby week, not a lot of breathing, emergency tracheostomy

    GREEN: Baby breathing OK, but with oxygen. Trapped at hospital while husband is out of town

    YELLOW: In the hospital, but only for a few days, mostly everyone is tired

    ORANGE: The sun is out, the nurse is at the house, maybe just one doctor's appointment

    PINK: Rosy-cheeked baby, eating well, playing, learning to talk and walk, la la la happy

Last week felt like a green week, but really it fell in between orange and yellow. Ike was sick for most of the week, but we didn't have to go the hospital. Yay! His nurse got sick too, though, boo… so there was a lot of frantic schedule juggling and screamy mommy time as I tried to wrangle sick trachy baby stuff, and two crazy kids.

Ike-a-saurus is MUCH better now, though apparently his funk is actively trying to kill his nurse. Hopefully she'll feel better soon, because damn. Sometimes you forget how much you really and truly depend on other people to get through the day. Not that I forget necessarily, but I don't like to think about it. I want to be independent and worry about my baby myself, and do simple things like pop him in the car and drive to pick up the wee-er one at school. But I've had to learn to give up some of these notions. At least for now.

We DO need help. We DO need nurses. And it's great to have them. I hate that I'm dependent on them, but I imagine this feeling can't be that much different than how a mom feels when she has to drop her kids off at school or with a nanny so she can go to work everyday, you know? I mean I know it's different, but still sort of similar. As much as moms want to be able to do every single thing for their kid, it's an impossible feat. I have a hard time admitting the impossibility of it all, and an ever harder time accepting it.

So last week was shitty. And there was no time for blogging because I was on the phone fighting with people, and on the phone begging people, and suctioning a trach 50,000 times a day, and trying not to be the Worst Mother Ever to the wee one and the wee-er one.

Remember when this blog used to be funny? Sigh.

Go read some of the archives from 2004-2006. Funny stuff in there. Way better than this mopey stuff.

OK. I gotta go try to finish writing a book. Ha, ha, I know.

Lemon out.

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Wouldn’t it be ironic to strangle yourself with oxygen tubing? A pictorial of my day.

A pictorial
minute-by-minute account
of my shitty day

Ike-a-saurus is on day five of some kind of sick. Coughing until he barfs, runny nose, good times. No fever, but no appetite either. It's been (barely) manageable up until today when the oximeter went APESHIT CRAZY.

Photo 3(2)
 
Can you see its glowing, evil face?

We are all minding our own business, trying to feed an angry (almost) toddler strawberry pediasure, when suddenly BEEPBEEPBEEPBEEP. It says his O2 sat is 50. If it was 50, he would be blue and almost unconscious. I've seen him at 50 before. And when you're pissed enough to have the monster strength to heave your glass bottle at your mom's coffee mug and break the fucking handle off, you're not at 50.

Photo(38)

Not at 50.

So the nurse and I are all, WTF? (After we are all, "Holy SHIT did you SEE that?") And then I remember the night nurse had had some WTF moments with the blasted oximeter, too (but not with bottles used as deadly weapons).

I know you're supposed to look at your baby to see how he's breathing (duh), but when he's trached and he's sick, and you don't know how well his body has adapted to low sats over time, you need an accurate machine. Right? Right.

It's still early yet, and the medical supply company has lovely banker's hours, so I call the after hours folks and tell them we have a faulty machine and need a new one asap. No one calls me back. My husband calls, and within moments someone claims to be sending a respiratory therapist out with a new machine for the day, while a different model is being shipped to arrive tomorrow. Nice work, hubby, but WTF? No one calls back the mom but the dad gets prompt attention?

Sexism

If only I had this close of a relationship with the medical supply company

The nurse and I decide that rather than arm wrestle each other over who gets to drop kick the pulseox out the window, we will patiently wait for the new one. In the meantime, we get to listen to BEEPBEEPBEEP about 65,000 fucking times, all while worrying, "Is really at 82? On 8 liters of oxygen? Do we take him to the ER? But he looks fine." This goes on ad nauseum. Ike even starts to take the machine's beeping seriously, and as it beeps at him he turns and points at it, all, "Eenh!" which is his polite way of saying, "Shut the fuck up."

Photo 2(3)

Do you hear that? Maybe it's beeping because the probe is in my hand.

So we wait and we wait and we wait and we wait.

RipVanWinkle6

We waited so long Ike's nurse grew a beard.

Of course, six and half hours later no one has shown up with anything. Or called. It is like being stood up for prom, if prom consisted of waiting for someone to show up at your house with potentially life saving equipment for your child. So, not like prom, technically, but still filled with rage and sweating and stress eating.

I call the medical supply company and I'm all, "Um, hey where's that pulseox you promised us?" And they're all, "Hahahaha, what? We can't hear you? You're not a dude." And I'm all, "Shut up, assholes, where's my goddamned pulseox?" And they're all, "Your whowhat?" And I'm all, "MY GD OXIMETER, BITCHES." And they're all, "Oh, right, that's not coming in until tomorrow." And I'm all, "What about the one you said you were bringing over today? To prevent me from having to take my baby to the ER for no reason other than your sorry ass faulty medical equipment?" Them: "Ain't go nothin' for ya." Me: "I'M GOING TO PUNCH YOU IN YOUR GAPING EAR HOLE." Them: "See you tomorrow! Maybe! Except that the RT who's supposed to bring the machine to your house is off tomorrow. Bye now!" And this is when I start smelling burnt toast and having an ice pick stabby feeling in the base of my skull.

Ragestroke

Rage stroke. All the cool kids are having them.

By this time, it's late. Our nurse has gone home for the day, the wee one is home from school, there is an adundance of screaming and crying and shouting and watching of Kipper, just like every other afternoon. Only, with a sick Ike-a-saurus on top of everything, I don't have time for a lot of the shouting part. This is why the wee one goes out in 52-degree weather to ride his scooter. Shirtless.

Once I figure this out and force him back inside (by gesticulating wildly through the window), I decide to try to cook dinner while still keeping tabs on the coughing, de-satting Ike.

Photo(36)

Bad idea

Then I give up on ever feeding anyone again and decide maybe a nice fuzzy-headed baby nuzzle will make everything better.

Photo(37)

Bad idea, II

Finally, my husband gets home from work, he manages to feed all of us, bathe some of us, and allows me to shoot tiny tranquilizer blow darts at others of us. (Kidding about the blow darts. Too bad.)

I get the kids to bed (after the wee-er one demands to wear her "Firetrucks and Ho's" jammies for the second night in a row. (Sigh. She means "ho ho ho's". Santa pants. And a firetruck shirt. I promise)).

And now I am here, typing this out and thinking, "What the hell am I doing? I should be sleeping." So I am off to go try that out. The pulseox is still not working right, and the poor night nurse is fiddling with everything and Ike is trying to sleep amongst the hubbub. It really is a disaster.

Epic_fail

Like this, but with the oximeter on top of the cage and the rest of us inside of it

I wonder what tomorrow will bring? Do I dare to dream it will be a WORKING PULSEOX? I guess only time will tell.