They are kicking me out

For the next hour and half I'm being booted out of Ike-a-saurus' room so that they can turn it into a sterile mini-OR. They're putting in his PICC line. We were hoping to avoid that, but the doc thinks he might have an infection brewing and wants to get his central line out. So PICC line it is.

He's had a habit of dropping his heartrate this morning, so I'm nervous about them sedating him and putting in this line. I know it's for the best, but that doesn't soothe me.

Little dude, little dude. It's just so much.

Advertisements

A bizarre experiment

Shall I try to liveblog the Oscars and Ike-a-saurus tonight?

I always love the Oscars. Tonight they seem more than irrelevant. They seem obnoxious and ostentatious. But my choices are, sit here and worry, or sit here and worry and liveblog.

I may not be able to stick with it, depending on what craziness ensues, but I'm going to try.

7:08 PM: Shift change. New nurse on duty. We like him. New respiratory therapist on duty. We like her, too. Precedex, Fentanyl, Versed, Vancamycin, expressed breastmilk, sodium bicarbonate, all flowing into my wee-est boy. They are taking a blood gas. I just finished a cheeseburger. This is how we spend our evenings. This is the first night since the 13th I've turned on the TV. It's very annoying.

7:12pm: Ike-a-saurus gets some CPT (gentle beatings) which he loves. Zac Efron is on the red carpet.

7:25: Ike gets suctioned. The monitor claims there is a CO2 occlusion. It is beeping like a submarine. Marisa Tomei is talking about her Versace gown and the butterflies in her stomach it causes.

7:30: Time to pump. Time for Hugh Jackman to dance a jig. Which one of us will pull something first?

7:37: The opening number is over. Not sure I like an auditorium full of Valentino and Tiffany-clad people giving a tanding ovation to a number that pokes fun at the Recession. It was funny, but a little bit yikes. Speaking of yikes, Ike's monitor alarms are going off but I am tethered to the pump so I can't see them.

7:44: I am really tired. Anjelica Huston is an elegant man. The monitors are going off again.

7:56: Tina Fey! Ike has pooped!

7:57: One day, when I write a movie titled Milk, maybe it will win best screenplay, too.

8:02: Ike has bubbles coming out of his nose. there is a scramble for the suction device, but it's falen on the floor. Doh. Low tech kleenex until a new suction thing is acquired. Slumdog Millionaire takes its first Oscar. Tina Fey is very glam tonight. I have soothies in my bra.

8:39: Wow. Jessica Biehl really needs to pump the left side.

9:32: Just had intermission for visit with one of Ike's former NICU nurses. Marveled at Hugh Jackman's heterosexuality.

9:56: Oh the pumping.

10:03: heart rate down to 48. Bagging involved. Mucus suctioned. Not sure what was happening on the Oscars.

10:13: Ike-a-saurus is sleeping again. I have avoided a heart attack for the one millionth time. Queen Latifah is going to make me cry, and not because she's wearing satin.

10:18: I feel like it might be Armageddon. Not just because of the farts my hospital cafeteria cheeseburger is causing, but because the Academy president isn't going to make a speech. What?

10:20: Danny Boyle wins for directing Slumdog Millionaire. Something is beeping again. Yay for clinical technicians who make things stop beeping so that I can hear Danny Boyle not explain why he is pointing at me like that.

10:25: I am wearing that same spray of flowers in my hair that Marlee Matin was just wearing.

10:26: Just kidding

10:27: Why are they playing Gone With the Wind music right now? Is Sophia Loren THAT old?

10:29: It is very convenient that Halle Barry's hair is also one of those jaw microphones. More beeping. O2 desat. But it's false. Ike was just moving around. He gets very uncomfortable when Oscar winners can't read teleprompters.

10:32: Kate Winslet wins! She snaps off her Lazytown hair and dances like Sportacus.

10:33: Not really. But she should. She's such a pretty girl, why someone decided to give her "I haven't showered in three days, thank goodness I have this comb and tin of Dapper Dan pomade" hair is beyond me.

10:35: We are out of Fentanyl. Our RT tonight has extra super glittery eyeshadow on. Like real glitter. Also, her nose is pierced. I see her out at the nurses station reading a book and I want her to think I'm cool. Can you believe that? With everything going on? I bet she is in the roller derby. Maybe she is Chestie Beater or Iron Lung.

10:39: Langella sounds like something infecting Ike.

10:42: It is too easy to make fun of Mickey Rourke. I wish he had brought his dogs as his date.

10:58: Time for a blood gas. Oops. Time for another Brady. Everyone just came running again. Down to 51. I dropped the stupid TV controller thing and it made a loud crash. While they were pumping up Ike's O2 to 100% we talked for a second about Slumdog Millionaire. Ike is getting an Albuterol treatment now. The cool RT is wearing Care Bear scrubs. She is so much cooler than me.

10:59: Oscars are over! Ike's central line is being filled with a clot-busting medicine so the blood will flow easier. I am eating a banana. More beeping.

Where is Lt. Tuck Pendleton when you need him?

Something's brewing inside my little Ike-a-saurus, but no one knows what it is.

Today was supposed to be the day he got his trach swapped out for a new one, his sedatives discontinued, and his vent turned way down. By 5 I was going to be holding him in a rocking chair, staring into his deep dark eyes.

Well.

The trach was swapped out successfully and the stitches were removed so now he can move and flail and wake up all he wants. Except that as they turned off his sedation, his respiratory rate skyrocketed. And as they fiddled with the vent, his rate stayed high. So back on the sedatives he went. RR still high. Everyone is scratching their heads.

The doctor is pretty convinced there is an infection brewing. A lung thing? Something from the central line? Dunno. And we won't know for 48 hours. He's going back on two different anitbiotics as a precaution until we know more about the cultures.

He was also supposed to have his central line removed today. But now it looks like they're going to take it out and replace it with a PICC line – yet another invasive thing that can introduce infection. And yet, we can't have him being stuck over and over for blood draws… sigh.

I knew the plans for the day were ambitious. I knew not to really expect everything to go 1-2-3. But my heart was set on holding the little guy today. Snuggling him and loving on him and feeling my milk come rushing back.

Two days and we'll know what's going on. Two days. Until then, we wait

Levity: Or How To Try Not To Go Batshit Crazy When You’re In The Hospital With Your Trach’d Baby

Jeff, the Respiratory Therapist, and I have been taking some of the daily turns of phrase here in the PICU and turning them into band names.

Here are some of the best:

Critical Airway
(of course!)

Gentle Beatings
(this is what the RTs do to Ike's chest to help loosen up the junk that accumulates)

Breastmilk Vampire
(hospital grade pumping both blows and sucks)

Smooth Fontanelles
(Bulging Fontanelles doesn't have the same ring to it)

Colace Prayers
(that one you guys helped me with. Yay poop!)

Non-sanctioned Screws
(this one is hard to explain)

In other news, Ike's virus panel came back from wherever it is they send those things. It was negative across the board. No virus. Never had one. How about THAT?

Wanna know what caused all the snot and the coughing and the narrowing of the already narrow airway? Any guesses? Any wagers?

Streptococcus pneumoniae

ding ding ding ding.

It's a common bacteria that causes sinus infections and ear infections and things like that. It is also resistant to a lot of antibiotics, which is why they had him on some hardcore scary stuff.

So it ended up being bacterial after all. Though, really, the infection was only the catalyst. The real trouble seems to be a congenital narrowing of the airway (which was exacerbated by the infection and probably reflux). If we can just get past these heart rate drops and O2 dips, we'll be able to learn more about the narrowing and find out what we can do about it.

This medical stuff is some crazy shit.

That would be a really long band name.

Smart guy

Today is the regional science fair!

The wee one won first place for first grade at his school (tied with a little girl in his class) and so now he gets to hang out with the other smarties at the Austin Energy Regional Science Fair today. His project is "Hive Five Robot Hand." He made this awesome animatronic hand out of drinking straws, string, cardboard and tape. You pull the strings to make the fingers move, and on the straws are little cutouts to make them act as if they have knuckles. It's super cool.

I'm so proud of him!

It stuns me that when I started this blog, he was a tiny dude. I've talked about his diapers and his naps and his learning to talk… and here I am, bragging about his science fair project. How does time do that? It just flits by.

And, yet, while it's flitting by it also seems to stand still.

I know this kind of observation isn't very unique, and it would not win me any accolades at the Regional Science Fair For Exhausted And Nostalgic Mommies, but it's true.

It's hard to know what to do with these normal life kinds of tasks and milestones now that everything is upside down. The wee one also lost his first tooth the other day. I can't think about how much I'm missing by being up at the hospital almost 24 hours a day. I can only hope that the time I do get to spend with the kids is "normal" time. I think "quality" time might alert them to something being really, really wrong, so we'll stick with normal.

Go wee one! Kick some science fair ass!

***** UPDATE *****

First place! Right on, little dude.

Photo(10)
 

10 years ago today

10 years ago today, at this exact time, I was eating Krispy Kreme donuts and getting tiny little flowers woven into my curls. I was nervous, but relieved – finally, we were getting married. I think this is probably a crazy thing for a 22-year-old to feel, but to me it felt like an eternity from the time my husband and I met until we got married.

22099

I have a letter that I wrote to a friend of mine when S and I first met. I was still so, so young. And in the letter I told her I had met this new boy and then in tiny tiny letters I wrote "I think I might marry him." That was years before we actually got married, but I always knew.

It's funny, because I was never the kind of girl who planed her wedding for years. I didn't care to have a million people there, I didn't want a poofy white dress and a bunch of bridesmaids. I would have probably happily just worn my jeans to to the courthouse and signed a marriage license and had that have been that. I just wanted to be with him. But our wedding was beautiful. It was small and full of tiny sparks of humor. Our reception had no DJ or anything like that. My dad and I danced together to an awful Tom Jones song and it was wonderful.

22099_3

S and I honeymooned on Jekyll Island (after a brief, fun whirlwind few days at Disney), just like my parents had done. Jekyll in February is pretty deserted, which is wonderful. We rode horses on the beach, traveled around to find the best Brunswick stew, lounged around at the super fancy hotel. We stayed for almost two weeks. It was decadent and even at that point in our lives when it was just us and our responsibilities were entry-level jobs and no kids, we still knew it was decadent. We always said we'd go back for our tenth anniversary. And even before all of this happened, we knew we wouldn't really get back there that soon. I wonder if we realized what a magical time it was when we were there, but I think we did. That's one reason why I love him so much. He forces me to live in the moment even when I can't stop my brain from fast-forwarding or rewinding.

He is my rock. My steady hand. The straight man to my bumbling humor. The Jack to my Liz. He takes care of me and I take care of him – but in completely different ways.

In some ways, two people could not be more different. But that's what works.

Also, he enjoys vacuuming and ironing. How could I not be in love?

10 years today. Wow.

22099_2