Information Overlord

They've started bringing me my own chair for rounds. Ha. That's what you get when you've been in the PICU for two weeks, I guess. This afternoon, the Attending even brought me over to the room across the hall where everyone scrutinizes the x-rays. I got an interesting peek at a cat scan that I probably wasn't supposed to see, and then they pulled up two of Ike-a-saurus' chest x-rays so that I could learn how to compare them.

His x-ray from this morning looked terrible. A whole lobe on his left side was hazy. But by this afternoon, it had cleared up considerably. Not completely, but I could see it looked better. They have been doing this IPV treatment today. It's like the CPT gentle beatings, but from the inside out. It looks like they hook up a car battery to his trach and it pounds air into his lungs. Somehow he just sucks his paci and sleeps through it. Then he spends the next few hours barfing mucus. That part is horrible, but I guess it's helping. It is the saddest, weirdest thing to see him cry and not make any noise.

He coughed so hard, he blew the feeding tube out of his nose – all the way up from his small intestine. Poor dude.

This whole hazy lung/barfing mucus extravaganza was not part of the original plan. It is new and disconcerting. They have him on antibiotics to knock it out before it turns into pneumonia, and they seem quite non-panicky about it. But it makes me a little panicky.

Right now he is napping and so maybe I will nap, too. I have no idea if I will go home today to see the kids or not. I want to see them so badly, but I can't leave him all by himself to barf mucus for three hours. The nurses keep an eye on his monitor from outside the room, and it has been looking great today, ironically. So I'm afraid if I leave him he will just sit in here alone, hacking up junk. That's no good at all.

Nap first. Worry about further plans later.

He looks so cute and back to his old self without the tube in his nose. I hate for them to put it back.

An experiment

Last night, we got a little adventurous, and after some ventilator wrangling we managed to get a shirt on Ike. Boy did he like it. I also managed to let him "accidentally" latch on for about 15 minutes while I was rocking him. The attending asked very politely for me to stop it, so we stopped it. But it was very nice.

He slept well last night, and so did I.

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Chillaxin in the boppy

This morning, he was still pretty happy, but after some vigorous CPT he totally puked a gallon and a half of mucus all over his shirt and blanket and everything (tmi? Sorry). So we're back to no clothes, but that's OK. He was so happy last night and so was I. I hope we can figure out how to do that again.

Today has been more up and down than I'd like. A little too stressful. But still nothing like last week. I'm just so happy he looks like Ike-a-saurus again. No more puffy eyes and puffy face. No more drool from the paralytics. No more distended belly from having to be bagged so often. He finally has that pointy chin again, too.

There are still so many things to get used to. He doesn't make any noise when he cries or when he coughs, for one thing. And we are going to need some v-neck shirts. And there are a million other things. But I have to not worry about that now. I need to worry about getting rid of this MRSA and getting him off the vent. I need to worry about seeing the wee one and the wee-er one more than just a few minutes a day. Too much stuff to worry about from so many different angles.

Today I feel stressed out. I feel tense and weirdly angry. The nurse keeps telling me over and over that there is only another 6 hours worth of breastmilk in the fridge. That's no problem because I am still pumping and have some frozen milk at home I can bring, and we have an order for milk from the milk bank. We are covered. But it still stresses me out.

And this COBRA nonsense. The new legislation sounds wonderful, but no one knows anything about it. We already have Ike signed up for COBRA, but if we could reduce our costs and get the whole family covered again, that would be really great. Too bad no one knows what to do.

I am rambling now and it's time for me to get my shoes on and run home for a bit to see the kids. Ike's monitors are going off, though, and I don't want to leave him. But if I want to go I need to go because my husband is here and I can't drive myself because the fucking car broke. Since when do Nissan Altima's break? Only in the Haiku of the Day family.

OK, I'm off before the pity party starts. I don't want to do that. It's not very productive. Time for home and a shower and some kisses from the kids. If my husband can drag me out of here. 

Up and at ’em

Despite the on again off again rash and constantly being messed with, Ike-a-saurus was sprung from his hospital bed today, for a few minutes of R&R with mama.

Holdingike

The on-call doc last night said that this little dude needs some lovin' and mama needs some lovin' so it was officially written down that Ike and I need to spend as much arm-in-arm contact as possible. That doc is a good doc. He really doesn't want me to go crazy.

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So Ike and I had some squishy time together this morning. It was very nice.

Holdingike3

Aaaaaaanaad Part II: Red Man Boogaloo

It is not an allergy.

It is a "reaction."

To the Vancomycin.

The one drug that can possibly knock out both the resistant Strep Pneumo and the MRSA.

It's called "Red Man Syndrome," and it looks super uncomfortable for poor Ike-a-saurus. All spotty and red, with a red dripping eye and a low-grade fever. Benadryl helps him sleep it off, and they are trying to give him a slower infusion of the drug to try to limit the reaction, but it's still there.

The doctors aren't worried, because I guess this reaction happens to a whole lot of folks, especially kids. But they are still watching closely. Anaphylaxis is the LAST thing he needs with an already narrow airway.

I asked the doc last night why he insisted on discovering/causing things to further kick my family in our collective nuts. I really did say that. He said, "You're not going to go all Thelma and Louise on me now are you?"  Haha. He also threatened to call in a Code Grey for a combative parent. He's a funny guy. I like him. But if he doesn't start giving me some better news I will blow up his big rig. Done and done.

So add this to the list of shit.

You should all start taking wagers about what's going to happen today. My money is on a freak clear-weather tornado, or possibly Poseidon will rise from an unknown underground sea and our ICU room will get flooded. Either way.

Aaaaaaaand

It's MRSA.

Am I going to have to get a fucking Segway and drive around this place yelling COME ONE like Gob in Arrested Development? Because seriously.

COME ON.

It's not an active infection or anything (knock on wood), so that's good. It's probably something he's had all along, that the whole family has had. But with the trach and everything they are going to treat it fairly aggressively.

Where is the closet brick wall? I need to bang my head against it.

Or better yet, who can bring a heavy bag to the hospital? Mama needs to punch something.

I got to hold him

I probably should have listed this as one of the accomplishments in last night's post, but "accomplishment" seems like such a boring fuddy-duddy word to describe being able to hold your baby after 9 days of barely being able to touch him for fear you would jostle his tube or close off his healing tracheostomy. (He had these two long stitches coming from his neck for five days – rip cords, or "Oh shit strings" as the infectious disease doctor called them. I can't remember if I blogged about them or not. They were there in case the trach tube dislodged and we had to yank open his trachea. Nice. They're gone now. Whew.)

So…

I held Ike! Yesterday morning. It was wonderful. We buried ourselves in his tubes and wires and vent apparati and I did as best I could to hold him to me and rock him back and forth. I cried and cried. I cry even writing about it.

I don't know if I will get to hold him today. They have rearranged some of his medicine pumps to a stationary pole instead of a rolling pole. What a horrible two sentences for a mom to have to write.

His PICC line went in fine yesterday and they have sent off the tip of his central line to see if it was getting infected. Hopefully not. Good grief. He is on all the abx just in case, though. He is also on abx in case he has a staph infection brewing in his trach. Holy fuck, you guys, let's not have MRSA on top of all of this. The culture grew slightly over two days, but they said not to worry because everyone has the germ in their trachea, they are just being extra cautious to test for everything, and hopefully the staph that grew is not MRSA. We will have to wait another day or two.

This morning, though, Ike-a-saurus has been awake and looking around. He is off the smack for the most part (though they are giving him Methodone and Ativan to help him wean from the junk). It is both better and more sad – well, different sad – to see him. I'm so glad to see his eyes and to see him less puffy and more himself, but I am so sad to see him bewildered and frowning. He doesn't look that way all the time, but even for just the few minutes he does, it shatters my heart.

They are gathering for rounds outside the room I am going to run out there and see what the plan is for the day. Maybe it's: Take him off the vent and bring in margaritas and queso for everyone!

We'll see…