Dee-luxe apartment

Yesterday, we got the word that young master Ike-a-saurus has been doing so well he could be moved to the regular respiratory floor of the hospital. No more ICU! No more ICU purgatory! I'm not sure if the regular respiratory floor quite counts as Elysian Fields, but I guess as far as hospitals go it's pretty nice.

Opaque windowed actual door instead of a glass-sliding door that can be kicked open in an emergency.

Fancy booby hatch to put food trays, allowing them to appear and disappear magically.

A really nice view of downtown and UT.

It is like the penthouse of hospital rooms. If only the shower water was hot, we'd be truly sitting pretty. As it is, though, I'll take this over ICU everyday. Though I admit I enjoyed having the big ol' cart of medical supplies in the ICU room. I could grab alcohol wipes to clean the breast pump (swank, I know). There were band-aids and tegaderm patches and all sorts of other things I could snag to do a little on-the-fly nursing. Now I have to ask for everything, and the higher floor we get in this place the stingier everyone is.

On the critical floors nurses will bring you handfuls of new pacifiers and Sweet Ease but here, not so much. I'm sorry, but when a paci falls on the floor in the hospital, I'm not going to wash it in the sink and give it back to my baby. Nope. That shit goes in the trash. Wasteful? Yes. But as a respiratory therapist so eloquently put it, "There are things in this place that won't wash off with soap and water." Those things will not be on Isaac's pacifiers if I have to go push someone up against a wall Jack Bauer-style to get a new stash going.

Now that we are in the new digs, one of our major goals is to get Ike eating again. The nursing is not going great. I'm sure it's hard to figure it out with a new trach AND a feeding tube going down the back of your throat. But they can't take the tube out until he starts eating, so it's a catch-22 kind of thing.

I showed the smiley picture of Ike to his sister (who is two) and she said, "Why he have a necklace in his nose?" Excellent question. He keeps pulling the necklace out, but until he starts eating they are just going to keep putting it right back in.

Today was our first day on this floor and it went OK. We still have a good bit to go before we can go home, but on day 20 (!) of our hospital stay we finally made it away from intensive care.

When I took Isaac to the doctor on 2/13 because he was so sick, I warned the wee one that we might have to take Ike to the hospital. He said, "Will you be gone for five weeks?" (That's how long I was in the hospital when I was pregnant). "Oh, no," I answered him. "No way. Maybe just a few days." Alas. Why do circumstances always make me a liar?

Hopefully, it won't be five weeks, though.

I am so tired. I need a necklace in my nose, too, so that I can eat and sleep at the same time.

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Moving up to the penthouse. Note tiny tiny Taggie blanket over face to protect from the bright lights. Also, biohazard breast milk, and a whole shitload of wires. If I could invent wire management for hospitals, I would be rich.

5 minutes of happy

A brief moment off the trach collar and without the artificial nose.

Freedom!

And despite 7 (!) self-administered feeding tube removals and 7(!) nurse-administered replacements, he still smiles. With his arms swaddled straight-jacket style, and hard-core steri strips stuck on his face, maybe this one will stay put.

Happy baby boy. He teaches me amazing things everyday. (And not just about NG tube placement.)

I am working on my smile, too.5 minutes of happy

Vintage aught 9

Tonight we are offering the finest vintage of aught nine binkies.

With an exquisite bouquet of plastic, co-mingled with a hint of funky hospital ice, the Binky Aught Nine is a paci for only the most refined palettes.

Please enjoy this exceptional treat as a gift from the establishment. We hope it not only soothes, but that it will remind you to think of Dell Children's for any further life-endangering and life-altering episodes you may consider in the future.

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Alternate post I was considering for this picture:

"Please remember to add Turquoise Binky to your injured reserve list. He will be out of commission for fantasy hospital play this week. Vigorous overuse has caused him to tear his RNT (Rigid Nipple Tendon) and he will need at least 6-8 weeks to recover. Teething season is always a rough one during Fantasy Hospital play. Please make a note in your lineup."

Shout out

So many blog posts in one day, I know. My husband was here, holding the wee babe for a long long time, and the in-laws have been at home wrangling the other kiddos (who I miss so much it hurts), but it gives me a few minutes to catch up on the blog. These minutes are few and far between these days. The IMC is harder than the ICU for some reason. Maybe because they are aggressively trying to get Ike-a-saurus better enough to go home, and his lungs  and tummy (up yours, Rifampin) are just not cooperating. I don't know.

Despite it all, though, last night, I went out. I didn't feel like going at first. I had to call my best friend and ask her to tell me that it was OK for me to be away from the hospital for several hours. Of course she said yes. And she was kind enough to not say "duh."

So out we went. Livemom.com held a blogging mom's social last night at this bad ass store called I F + D. (Go read the product descriptions – they're great.) It's one of those places that is totally too cool for me. Very neat firniture and wall coverings and accessories. The kind of stuff you buy when you're attractive and single or pretending to be attractive and single. If I had any money, I would buy that stuff and pretend like my suburban house was a fancy downtown loft, and then the kids would spill grape juice on all the new furniture and wall coverings and I would have to pretend like I had splattered wine stains caused by a drunken brawl when one Fancy Visitor started arguing with another Fancy Visitor about the allegory of Edward Albee's play, The Goat.

Anyway.

It was an event for local mom bloggers to meet each other and win raffle prizes and eat good food and listen to a guest speaker (Stephanie Klein of greektragedy), and even bid on a silent auction to benefit Ike, and help us combat some of this shit life keeps throwing our way.

If I am being really honest, I don't think I can classify it as a "fun" time. It was good for me to get out. Wonderful to spend time with friends…. but overwhelming to be out in public in a social setting. It's hard for me to be in social settings under the best of circumstances, so this was a bit of an out of body experience.

My friends and I wore Ike-a-saurus t-shirts (designed by Jenny, made by Amy, and soon to be for sale on Cafe Press) and did our best to socialize. I felt weird being out, downtown, still with the hospital bracelet on. But I'm glad I went. I met some very interesting, generous women – many of whom have equally heart-wrenching stories of health problems with their own children.

It was an impressive display of community that I am still processing. Just like the bake sales and rummage sales and online auctions and everything else that my Mamas are organizing for us…. it is humbling and sobering and unreal and marvelous and shocking and I just don't know what to say about any of it. Except for thank you.

Thank you to everyone.

Trach change!

the hole was smiling
a tour of new orifice
has really nice view

Yesterday, my husband and I changed out Ike-a-saurus' trach for the first time. I yanked the sucker out and my husband popped the new one in. In the brief moment the hole was exposed and we got a good look at it, I swear that it smiled at me.

"I am the new orifice that saved your baby!" It said, Naked Lunch-style. "Hello."

"Hello, to you, too," I said. "Thanks for making sure my baby gets oxygen."

"No problem," it replied, oozing a little phlegm. "Sorry about all this shit I keep spewing out."

"Ah well," I answered. "You're a hole. What else are you supposed to do?"

And we all laughed merrily.

Only five more trach changes to go, a lung staph infection to beat, and learning how to nurse again… then we can go home.

Teething. What?!

"Is he teething?!" This is the question the nurses and RTs and doctors have started asking when they come to poke at Ike-a-saurus.

I think he is.

He is getting after his thumb and his pacifier and he is fussy and crying. He's not fussy all the time, but there is never a moment that he doesn't have his thumb or his paci in his mouth.

Poor guy.

They are liberal with the Tylenol here, though, and that's good. Plus, I imagine the methodone doesn't hurt, either. Though they have been weaning him from the methodone and I'm afraid that might be happening too quickly. The fussiness, the throwing up… signs of withdrawal from the narcotics… are getting worse.

The night before last, we were moved out of the PICU and into the IMC – an intermediate hallway. Kind of like PICU-lite, or PICU middle school. It was a terrible night. Copious amounts of barf, multiple attempts at putting his feeding tube back in after he retched it out, many x-rays to make sure said tube was placed in the right area (it wasn't the first attempt, ugh), etc. A bad night.

Last night was a little better, but he is still so incredibly fussy. It's not like him. And I know he has a brand-new hole in his throat, and a variety of extracurricular infections going on, but the crying is pretty much non-stop. They even resorted to giving him morphine to see if that would help, and it did a little. So the docs are reevaluating the plan to wean him off the smack. I think slower weaning might help tremendously. I also hope it will help him breastfeed. A calmer baby is much easier to hold to your breast, than one who is screaming (silently because of the trach, so sad a strange), and alternately throwing up.

I don't know what today will bring. I hope we are able to stay in the IMC and not move back to PICU. Forward progress… even small forward progress is a good thing.