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.

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.

 
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.

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?

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."

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.

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.

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.

Bad idea

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

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.

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.

Do you hear me, folks? I AM EMBRACING TECHNOLOGY.

All of this CAN BE DONE. But only if I can get my act together, and only if no one needs to be rushed to the ER. And only if I can STOP RANDOMLY SHOUTING.

Follow me: @haikumama

http://twitter.com/haikumama

We'll see how it goes.

Except I may not get a chance to make any tonight because Ike-a-saurus is sick. Alas. He was doing so well with the gaining weight and the eating and the walking, and now he's back on o2 day and night, coughing his wee brains out, and generally feeling icky. We're trying SO HARD to stay out of the big H this time around.

Also fun, the wee-er one is on abx for a double ear infection (one of those that made the doctor jump back and flinch after he looked in her right ear). She's much better now, but still super grouchy. We're getting some wonderful gems like:

Wee-er one: [spontaneous crying] "I want my mommy!"

Me: "I'm right here, baby."

Wee-er one: "No! I want my OTHER mommy!"

Me: ???

Can I blame the Omnicef? I blame the Omnicef.

And just this very morning, the wee one came up to me, all excited, and said, "Hey! You know how sometimes you get water poop? Well I just had completely liquid poop!"

So there's that.

I think we're about to have some kind of awesome trifecta of fuckedupedness as each of the kids trade illnesses in a circular pattern until we all end up laying on the kitchen floor surrounded by our own filth.

This means I may not be able to liveblog the Grammy's tonight. I will try, dear friends. I promise to try. And if all else fails, I can liveblog the whole family laying on the kitchen floor surrounded by our own filth. Maybe we can get aLifetime made-for-TV movie out of it. "The Haikuoftheday Household: Oxygen, Poop and Hysteria. Or, the story of one mother's struggle to have it all, if "all" counts as one day of three square meals, not traumatizing the children by screaming at them, and 8 hours of sleep."

I'm going to go take off my pants Lady Gaga-style and have some toast before the liquified shit hits the fan.

This post is so gross.

"Where's the baby?!" I shouted, running through the house. The front door, of course, was wide open. The wee-er one, putting on her coat, helpfully gestured outside. And there was Ike, sitting in the driveway, poised to eat a random berry he'd found.

I snatched him up. "How did he get out here?" Innocent looks all around. "He just did," the wee-er one answered. Uh-huh.

So back inside we went. I sat him down on the floor in the kitchen while I contemplated what to burn cook for dinner. I turned around and he was gone.

"WHERE IS THE BABY?" I yelled. More innocent looks from the older kids. I ran into the living room and I saw the tail end of a tiny diaper rounding the corner - upstairs - into my bedroom. So I hoofed it upstairs and dragged him back down to the kitchen. This time, I strapped him in his high chair and gave him some tomato paste to play with. (Side note: why doesn't tomato paste have fat?)

Fast forward to later in the evening. My husband was finally home after being trapped in traffic, the older kids were upstairs shouting things at him in unison and Ike-a-saurus and I were hanging out downstairs.

Ike bolted for the stairs, but this time I was with him. He stopped on the little landing and we played a quick game of "I see you on the stairs, get over here" which is like peek-a-boo, but involves slapping your hands onto the stairs and ducking your head and sometimes smashing your eye into the railing.

Tonight, the game was going along bruise-free when I noticed that Ike's foot was caught in one of the creeping tendrils of the plants we have on a ledge high over the stairs. I reached over to get the leaves off his foot when BAM. The pot - twice Ike's size - came crashing onto the stairs. There were pot shards everywhere. Wet soil was on the wall, the baseboards, the stairs - and covering the entire right side of Ike's body from his hair to inside of his diaper. That pot missed clonking him on the skull by about a millimeter.

If it's not one thing, it's another. Are we living a version of Baby Final Destination? Because if we are, THAT IS NOT COOL, UNIVERSE. NOT COOL.

Tomorrow I have no plans to pee or cook or go on the stairs. We'll see how it goes.

Anyone ever do that?

Me neither.

This is the night it all started last year.

Though, it actually it started as a pretty joyful day. The wee-er one and I watched the inauguration proceedings all day on TV. I spent most of the day holding Ike-a-saurus, nursing him, playing with him, watching him sleep - and I felt lucky. Happy. Relieved that our terrible 2008 was over and that Obama was ushering in not just a new administration, but a new outlook on everything. I was wearing my Obama shirt, where he's riding a unicorn on top of a pedestal. It really was a unicorn and pedestal kind of morning, from a unicorn and pedestal couple of weeks. We were done with the bad and ready for the good.

And then, that night, I noticed that Ike was making a weird noise when he was breathing. He didn't seem sick and he was eating fine, but the noise was kind of disconcerting so I called the after hours number at our pediatrician's office. There was some brief discussion over whether it was worth the $15 charge, but we decided to go on and call because the noise was kind of weird and we were still getting used to having our little preemie at home.

As soon as the doctor talked to me she said, "Is that noise your baby? Is that him breathing?" I said yes. She said, "You need to take him to the ER. It's probably just croup, but with his preemie history, go get it checked out."

I got a little nervous after that, even though until then I'd been pretty calm. I'd only had to take one of my kids to the ER once, and that was for a bonk on the head out of town.

So we packed him up in his car seat and I drove him to the children's hospital. They diagnosed croup, gave him some breathing treatments and sent us home. He was still making the noise. Louder, even, but they said it was normal and he was fine.

The next day we followed up with the pediatrician who was concerned. He directly admitted us to the hospital just to on the safe side. He, like me, wasn't a fan of the noise Ike was making to breathe.

We came home two and a half days later. Then we followed up with doc and were sent back to the hospital because of the noise. Then home again, a visit to the ENT, and a diagnosis of laryngomalacia and reflux. We were told the floppy larynx was making the noise - swollen from reflux, and possibly aggravated by croup. We were told he would be noisy until 12-18 months and then everything would probably resolve.

And yet, the noise got louder.

So loud I couldn't hold the baby and talk on the phone at the same time.

This was his breathing, while perfectly calm, perfectly happy.

I made that recording seven days before they were performing chest compressions and intubating him in the PICU.

But even with that level of noise the ENT we saw (a second opinion) said that as long as Ike was eating and gaining weight everything was fine.

Obviously, it was not fine. Obviously, it was not croup. Obviously, I am still not over everything that happened. I replay those weeks over and over in my head wondering if there was anything we could have done, anyone we could have seen to somehow have avoided the trauma to come.

Obviously, there was nothing we could have done. Maybe, maybe we could have requested a bronchoscopy to investigate under his vocal cords. If we had done that, he probably would have been trached immediately, but it would have happened before he got sick. If he had been trached earlier we might have avoided the two weeks on the ventilator in the PICU and the intubation that could have scarred his airway even more. But no one - no one in Austin anyway - was going to put a seemingly healthy 5-month-old preemie under general anesthesia to look at his airway. Not unless he was having blue spells or losing weight.

So today was the day it all started. Had he always had a narrow airway and he just hit a critical weight and that's why the stridor began? Was it damage from silent reflux we knew nothing about? We'll never know, and I guess it doesn't matter, but I will always wonder.

Everyday, when I'm falling asleep, or waking up, or going about my day, I think of the night of Valentine's Day. 26 days after the stridor began. Me, barefoot, chasing a racing gurney down a hospital hallway as a team whisked away my gray, but still crying, baby. After 26 days of deafening stridor, complaints and jokes about how the family was going to have to yell to be heard for the next 18 months, a tube was put down his throat, and then a few days later the trach, and I have not heard him cry since. He cries, of course, but not with his voice.

Everyday I'm thankful we have that trach, and everyday I think of the last day I heard him cry. We can hear his voice now - he's learning to vocalize around the trach - and it's amazing. But I've still never heard him laugh. Well, once in his sleep, on January 19th last year. And now he's nearly 17 months old. He laughs, chuckling in his silent trachy way, and it's awesome. But I haven't heard him laugh laugh. After weeks of whispering to him in the NICU, just after he was born, that he was going to make it and one day he was going to give a baby chuckle and the NICU would be behind us, I feel like I made a promise I shouldn't have. But who could have guessed all of this?

This was when it started. And it is making me freak out a little bit.

But this is how he is now, so I should chill with the PTSD. More zen, less ohshitohshitohshitthisiswhenitallstarted.

I just keep telling myself, this is how he is now. He's OK. It's OK. I need to be OK, too.

"This is my trach, peeps. It's good for breathing."

7:01: The podium is AWESOME. It looks like Ricky Gervais has two golden legs. Like if the Tin Man had to get dressed up for an awards show.

7:03: Ricky Gervais is killing it, by the way, even if he has a tiny penis and makes fun of poor Asian children.

7:05: Nicole Kidman points out that George Clooney has set up a thing to raise money for Haiti. Her nipples are standing up and saluting him. Easy, Nipples, we already know how great he is.

7:08: Ike knows I'm ignoring him so he's started signing "milk" at Monique. Or maybe it's a delayed reaction to Nicole Kidman.

7:10: Maybe I should feed him.

7:12: Toni Collette wins for something! Diablo Cody is wetting herself somewhere. (Don't tell Diablo that the real reason Toni won is because Tina Fey and the girl from Glee canceled each other out.)

7:16: I love Lauren Graham, but pink satin is no one's friend.

7:18: Jeremy Piven's fake tan is a bit wowza dark. Like he's trying to trick people into thinking he's Denzel.

7:21: "Animation is not just for children, it is for adults who take drugs." HA. Paul McCartney has funny writers.

7:23: Up wins for best animated feature! My kids watch this movie everyday. It makes me cry everyday. Because I'm a sappy sap.

7:28: I think Kate Hudson's dress is made of fondant. How is it not wrinkled from the ride over? It's some kind of NASA-created fondant material with no smudges or lines.

7:32: Ricky Gervais has flustered Felicity Huffman AND insulted the president of the Hollywood Foreign Press Association. I can see the train wreck coming and it.is.awesome.

7:35: Why is Michael C. Hall wearing this skull cap? Hair dye mishap? Cold ears? Giant, oozing robot brain?

7:37: Julianna Marguiles wins for the Good Wife! I never win for being a good wife. In case you were wondering.

7:42: Michael C. Hall has cancer. And now I go to hell for saying he has a giant oozing robot brain. Just to make it even, he can totally make fun of Ike's trach. "What's that thing on your neck, kid? Smoked one too many cigars, huh?"

7:44: Is Cher being snippy with Ricky? He should watch out. She could totally kick his ass. She would just swoop over him, get kind of sweaty from the exertion and melt in a big gloopy mess, suffocating him. She is a silly putty black widow.

7:48: My husband just left the room to go to bed. He thinks his roku is more interesting than I am. I really can't fault him for that. When you push my buttons I do not play old episodes of Buck Rogers. I just throw things and sprout gray hair.

7:54: There are a lot of things I regret not doing when I was pregnant. Like going full term. [push the red button] One of the other things, though, is that I never got to wear a fancy dress to show off my giant pregnant boobs. Lucky Amy Adams!

7:56: OH NOES! Drew Barrymore isn't making out with Jessican Lange! Did they have a spat? Is it because Drew is wearing the snowy foothills of a model train set as a dress? What is it?!

8:00: Meryl Streep is nominated against herself! Will she beat herself?

8:01: She did beat herself! But graciously and elegantly, and she said it was an honor to be nominated against herself. No, actually, she said she wants to change her name to T-Bone Streep. I totally did not make that up.

8:05: Note how Meryl doesn't get played off like everyone else. I had enough time to run upstairs and tuck in both kids really quick, making empty promises of snacks and drinks. Oh, wait. I had it paused. HA. But they're still not playing her off stage.

8:10: No desire to see Precious. No desire to even see clips of it. Nope. Nuh-uh.

8:12: My 7-year-old has the same hair as Kevin Bacon. KB must be growing out a summer buzz cut, too.

8:14: Drew Barrymore and her snowy foothills win for miniseries! I wish that the fiber optics on her dress were working.

8:16: If Drew's fiber optics were working, she would be the perfect accompaniment to take to Sesame Street Live. You could wave her in the air while Elmo ice skates. She would have to stop talking about lisping and being retarded, though. Maybe just stop talking all together.

8:23: Jennifer Aniston seem pissed and vaguely unable to read. She looks great, though. And naturally tan, instead of orange. She better not turn like she just did right then, though, because her hoohah almost popped out of her dress. It did not appear to be naturally tan.

8:25: Jason Reitman is fabulous. He rocks the facial hair AND he seems to be nice.

8:27: "Alan Baldwin couldn't be here tonight." Way to go Kutcher.

8:28: I like how Clooney thinks it's ridonculous to be at this stupid awards show right now when he could be setting up for a Haiti fundraiser. It makes me think of last year when I was liveblogging the Oscars in the PICU in between frantic moments of Ike being bagged (because his breathing would stop all of a sudden). There is this dichotomy in the world, you know? We all know there is. And sometimes pointing out the ridiculousness of it all - making fun, rolling your eyes, is a good way to point out how fucked up things are.

8:33: Sophia Loren is wearing the coal dusted hills on the other side of the tracks from Drew's snowy foothills.

8:36: Foreign film winner time = snack time

8:39: Mad Men wins Best Television Drama. Should I watch this show? I tried a long time ago and it just didn't click. Would it click now? I really kind of actually hated it and that's so not like me. I'm all up in the trends. I'm wearing an Ed Hardy shirt RIGHT NOW. And I'm reading Dan Brown. See?

8:41: I'm not really wearing an Ed Hardy shirt.

8:41.5: Or reading Dan Brown.

8:42: I'm not really up on the trends at all. My head is hanging in shame. Well, to be honest, it's hanging because I said the phrase "up on the trends". Twice.

8:45: Super sexy teenager alert! If Alan Baldwin was there, and drinking, he would kick his ass and it would be kind of great.

8:47: Chloe Sevigny is wearing a Claus Oldenburg sandwich board and she beats Jane Lynch. Lose-lose.

8:49: If I was hott, Halle Berry and I would have the same hair.

8:50: But not the same boobs.

8:51: Alas.

8:54: If I took a Dayquil and drank a Coke would my heart explode? I'm always looking for creative energy boosters. But not if they make my heart explode.

8:56: NBC may be "in the toilet" (to quote Julia Roberts), but I like their new promo font. Is that a weird thing to say?

8:58: I like DeNiro imitating Scorcese having sex with 35mm film. If Gervais had done that, Nicole Kidman's nipples would have glared at him. They seem to be tolerating Bobby, though.

9:01: The oximeter is alarming. Drat. Who gets the golden globe for baby trach suctioning?

9:04: I love how the camera just showed Jennifer Garner and she was shaking her head. I think she was thinking "oh shit, there's a camera on me, I better look  oh-wow-he's-so-amazing-I-just-can't-believe-it". But I bet she was really shaking her head in a "Ben Affleck, stop throwing olives at the backs of knees" kind of way.

9:08: Mel Gibson is almost as repellent as my kitchen right now.

9:10: Also, for no reason I can put my finger on, that show Mercy makes me want to stab out my eyes.

9:12: Holy shit, you guys! Jodie Foster! She looks amazing. She is, like, aging backwards.

9:15: The "Golden Glove" goes to James Cameron. An inside joke? Or maybe I am going deaf. Very possible!

9:17: James Cameron isn't speaking Klingon. In case you were wondering.

9:18: Not that I would know.

9:19: Glee wins! 30 Rock loses. This makes me sadhappy. I might have to sing about.

9:21: it

9:26: Mike Tyson and Sophia Loren on the same stage in one night brings this whole thing to a new level of absurdity. Like the first time I ever buy paté with truffles in it is because I'm readying my baby for surgery. Except in this analogy - or whatever it is. I don't know anymore. I'm tired - I think my baby is Mike Tyson. Which is wrong. But you know what I mean. Do you? Because I don't think I can figure it out anymore.

9:29: The Hangover wins, by the way. And now the world is a more forgiving place for tiny asian peni.

9:31: WHY ARE COOMERCIAL SO LOUD?

9:32: I left that last update in there because the typos make me laugh. I NO TYPE ENGLISH.

9:34: Have you seen Mariah Carey's boobs tonight? Remember Lorraine in Back to the Future Part II?

9:36: I feel compelled to see the Blind Side. Even if Mickey Rourke looks pissed that Sandy won. Why is that movie compelling to me? Normally I hate stuff like that, and yet...

9:41: Robert Downey, Jr. is super funny and he's getting lost in his own joke which I can always appreciate. Also, he looks a little like my husband which I can also appreciate.

9:45: Commercials for doing your taxes suck all the fun out of the night.

9:47: Jeff Bridges gets a standing O! No one is pissing on his carpet tonight.

9:52: These Chrysler commercials are weird. Cars ≠ movies. 

9:55: Avatar wins. I am ambivalent. Maybe I will see it if I get a chance? I am mostly struck by how Julia Roberts has real hair like everyone else, that gets frizzy in the rain. I am less struck by how James Cameron is unironically telling everyone in the theatre how awesome they are for having awesome jobs.

10:00: Now it's time for me to clean the kitchen. I could liveblog that, too, if you want. But I bet you don't want. So... Good night!

Stop on by around 7 pm central. I might be a bit late getting started because the pesky kids have to be put to bed at some point. But never fear. The catastrophic liveblog is ON.

In our desperation for Ike-a-saurus to gain weight, I've put together an impressive grocery list. If I wasn't so tired, I'd hit the store tonight. Alas, I might make it tomorrow. Though I'm sure I'll be just as tired then, too.

Here's the list. It kind of looks like I'm planning a diarrhea party:

salmon paste (or similar)
paté
pork rinds
olives
strawberry pediasure
Gerber graduates yogurt melts
Other freeze-dried food (astronaut ice cream? enchiladas?)

Now that I think of it, I probably should have just taken a picture of the list, so that you could experience it's full WTF-ness.

It's no holds barred over here, folks. Take no prisoners. Balls to the wall. Once we managed to get Ike-a-saurus to eat a tiny tiny bit of solid food with only a few gags, his nurse and I were like, "QUICK. WE NEED MEXICAN CHICARRONES. FROM MEXICO. STAT."

High fat and strong flavor. That's what we're searching for. Apparently, we're also attempting to increase his sodium intake by 95,000%. Not sure what the plan is there. Having the trach, though, means strong flavors are more appealing. At least this is what I've heard from other mamas with trached kids. Because he's barely using his nose, if at all, his sense of smell and taste are probably impaired. Trached kids are known for loving really strong tastes and ignoring sweets. Most of the food we feed this little guy right now is of the sweet variety. Breast milk, Pediasure, and that's about it. He was rocking the Greek yogurt for a while, but he also threw it up a lot and now he won't touch the stuff.

I put two Goya stuffed green olives in his mesh feeder thing, and yowza. His eyes did a zoinks! doubletake and then he was chowing down. He still can't manage the olives on their own, though, he really has to have things that will dissolve in his mouth. Even things like Pirate's Booty or Cheerios are difficult for him because they break into so many pieces in his mouth. Plus, they lack the fat and calories he needs.

He's doing well with these Gerber yogurt things because they just get smaller and smaller in his mouth and he can easily pull them out to take a break if it's too much. I noticed they're freeze-dried, which is what makes me wonder if other freeze-dried food with shrink in your mouth, too? Some freeze-dried enchiladas for camping will have a good amount of fat in them. But again, the sodium is probably hideous.

I'm not trying to replace his regular caloric intake with solids yet. He's far from ready. But I love that he's interested in food and wants to take bites and try things. It's heart-breaking, though, when those bites end in severe gagging and throwing up. Not to mention the risk of him aspirating the vomit and coming down with aspiration pneumonia.

It's a tricky business, feeding this little guy. But if I can find some fattening snacks that will dissolve in his mouth, I am all over it. It will encourage him to keep being interested in food, and it will add to his daily caloric intake.

I'm going to play the Rocky theme song when I whip out the salmon paste. This may be an occasion for haikuoftheday's first vlog.

I was thinking about how, when the wee one was a baby, 3- and 4-year-olds seemed to be these frightening, exotic grown-up children who ran amuk at playgrounds and made me fear the future. At one point, even younger toddlers made me feel this way. What? They WALK? They have TEETH? They're SO OLD.

Now that I have kids in all kid departments (baby, pre-school, elementary) I have a whole new perspective on this. The wee one, my former baby who I refused to believe would ever get teeth or walk or become a rambunctious toddler, is now 7.5. He plays hard and rough, but he can make his own sandwiches (!) and when he's had enough of everything he'll take himself to his room to lay in bed and read a book. This is not frightening at all. It is a revelation!

And the wee-er one, who is 3.5, still seems like such a baby to me, especially compared to her older brother. I want to cuddle her and comfort her and dress her and chase her around. She seems old compared to Ike-a-saurus, but not THAT old. She is oldyoung. Biglittle. She, of course, resists all my attempts to hold her close and keep her still and smell her hair.

Ike-a-saurus is a whole story unto himself. Nearly 17 months old, but really 14 months adjusted. He has been an actual, physical baby longer than the other kids. He only weighs 16 pounds, so he is still really tiny. When the others were little, I marveled over how quickly their first year flew by. How, all of a sudden, they were walking and talking and running and eating. It's different with Ike. In some senses, he is still very much a baby. So many bottles, so much crawling. But in other ways, he's as old as his months tell us. He says "hi!" very clearly. He has signs for "milk" and "bye-bye" and we're working on "slide". He says "ja ja" for Georgia sometimes. "buh buh buh" for his bottle. He's mischievous and into everything. But he's still a baby. He's kind of like a Elfin child or something. Tiny, busy, baby-like, but not.

I struggle to believe I've been a mother this long. I think of the days when it was just me and the wee one, at home, truckin' through our afternoons. And it makes me realize that even though things are SO different now - so polar opposite of what they used to be - I'm incredibly lucky to have experienced all of these different facets of motherhood. From never having to worry about more than a cold or a bout with the stomach flu to now. From coasting through milestones like walking and talking without a second thought to now. From struggling with balancing two kids and thinking THAT was tough... 

I've seen how it can be, I see how it is. It's hard to not think "I've seen how it should be," because there isn't really a "should be," you know? That's a hard thing to believe sometimes, but if I can remember that, I'm good. No "should be" just "how it is". I've seen it all from so many perspectives, and that is a kind of formidable gift.

I can't see how it will be, but I think that's OK. I don't really want to know, and I'm just amazed to be able see how things are today.

How old AM I?

HOLY CRAP.

I was walking through the living room yesterday and I noticed a tube of KY jelly by the remote. First thought: I should put that away before we lose it. Second thought: Wow, have we used this much already? Third thought: I bet we are some of the only people who don't find it weird to have KY in a bin on the table next to the sofa.

We had left it out after a trach change. No big deal. But it made me think about how weird our day-to-day life is now. It's not weird for us anymore, but to look at it from the perspective of "this is how it used to be, this is how it is now" it IS pretty fucking strange.

For one thing, I use the word "secretions" more than anyone ever should. It is a foul word, with connotations of aliens and slime and slimy aliens. But that's what everyone calls the gunk that comes out of the trach. A face breathing person may have a runny nose, or you might sneeze out some snot. And that's that - it's snot. But when you have a trach and you sneeze or cough or breathe, it's not called snot. You're saddled with "secretions". So we say "secretions" a lot around here because there are a lot of them. It is not my favorite. I'm trying to come up with something better. Bogies seems to work. Or trach snot.

Another thing that's different around here is the amount of time spent on the phone. I think this is probably the case for everyone with Medicaid, not just for people with trachs. But a trach + Medicaid = agonizing hours on the phone.

Sample: Yesterday I called our new DME (the medical equipment company) to find out why we haven't been able to reorder our medical supplies for the month. Turns out they don't have authorization from Medicaid yet. So I call the old DME. They haven't rescinded their own authorization. Even though they said they did. Three weeks ago. I call the old DME back. They say write a letter to Medicaid telling them we're switching DMEs and then fax it. I write the letter and try to fax it, but the fax won't go through. Turns out the power has gone out in much of north Austin. Finally get the letter faxed but now it's after 3pm on a Friday.

Still no medical supplies.

Next I call the specialty pharmacy to order the Synagis for Ike's monthly shot. You're supposed to call 7-10 days before he needs the shot. They don't say if they mean business days, but I'm guessing they do, so I call even though he doesn't need the shot until late this month. "Please enter the new 7-digit extension of the person you're trying to dial." Well, I only have a four-digit extension. After a roundabout fight with an automated phone system I get a voicemail box for the "synagis team". No one calls me back.

Then I need to refill the Tobi. But since we've changed primary insurance policies we have to now go through a specialty pharmacy to get the Tobi, instead of just Target. This means a pre-authorization and mail order. Even though he's been on the Tobi for ages, we have Medicaid, and he needs to start it NOW because he's getting sick. No Tobi until my husband calls Walgreens and says something about "punching someone in the dick" and then suddenly there's a workaround.

Etc.

Can you see how this might make a person stabby?

Add in emails to the trach nurse where suddenly a prescription is called in for more Bactrim. UGH. Then me trying to avoid giving Ike-a-saurus the Bactrim because it makes him not eat and puke all the time.

Add in the swallow study (angry starving baby signing "milk" with both hands, x-rays of him eating, lots of doctors, lots of talking, lots of angst). I need to get a DVD of the study sent to Cincy but the Dell tech says they can't do it because of proprietary computer systems. I call bullshit, but still no dice. Then I'm told they'll send a written report to our doctor here, but not to me because I'm not "allowed" to have one. Um, isn't this my kid potentially aspirating and ruining his lungs and not being able to get his trach out? How is it not allowed for the doctor's report to be sent to me? Because medical records wants me to pay for it. That's my best guess.

This irritation is momentarily healed by our home nurse buying me a surprise sausage wrap so that I am distracted and don't go full-on apeshit in the middle of the radiology department.

Side note: Ike did great on the swallow study. No signs of aspiration, though he is still "high risk" because he is not fully controlling his swallow.

Add in drifting dunes of laundry around the house, a defiant 3-year-old who insists on yelling DAMMIT at me (where does she get that, I wonder?), a book to finish writing, two school visits next week to prepare for, dinner to cook, lunches to make, National Championship football games to lament, and you can see how weird things are getting.

KY jelly on the side table, Colt McCoy pinching a nerve, me saying things like "Hi, Marcy, I don't understand why the Medicaid authorization hasn't been approved yet." And then Marcy saying things like, "Well, the T-19 was faxed over and it was blurry so we had to fax it again but it was still blurry and the Medicaid people couldn't read it so I had to fax it again" and me saying, "ARE YOU TELLING ME WE HAVE NO OXIMETER PROBES BECAUSE NO CAN RETYPE A FUCKING FAX?" And then Marcy saying, "Well you can order some and pay your private insurance copay" and me saying "THAT WILL BE A MILLION DOLLARS. Plus, PLUS, I didn't stay in an awful, smelly, scary nursing home with my medically fragile baby in order to get a Medicaid waiver that insures his medical expenses will be covered ALL SO THAT I COULD FUCKING PAY A PRIVATE INSURANCE CO-PAY BECAUSE YOUR GODDAMN T-19 IS BLURRY!"

This is when I have an anger stroke and forget what this post was supposed to be about.

I am starting to have anger issues. Patience issues. A build up of frustration. A desire to drive fast, listen to Marilyn Manson, and punch things.

We were talking about how weird things are. Right.

Seriously. Aliens could land in the middle of the living room, threaten to vaporize us all with their atom-shrinking photon rays and I would be all, "Whatever, green dudes. Could you grab that KY off the floor over there and hand it over? And can you clean this suction canister on the way to the kitchen? Oh, can you also not get your secretions on anything? Thanks."

That would not be an out of the ordinary scenario at all. Just another day. Sausage wraps, secretions, KY jelly, DMEs, T-19s, power outages, 7-digit-extensions when only 4-digit extensions exist, and vaporizing atom-shrinking photon rays.

I have to get out of this house.