Buckled into seat
Riding home on a sunbeam?
Cam’ra so hopeful
Don’t tell insurance
No coverage for sunbeams
Only pay for rain
Next stop the sofa
My amazing husband stayed calm and professional and totally side-stepped case management. All day on the phone and he did it.
We have the equipment. We have the training. We have the sleepy baby. We are almost out the door. And we didn't have to do it AMA.
How many days has it been? 25?
And this party is just starting.
Still no solution to the problem. Still no answers for the months ahead. But for now, we're going home.
We'll be back in two weeks for another bronchoscopy. But for now we're going home.
Except I don’t have any Xanax.
We have been cleared for release from the hospital. Yay, right?
Well, thanks to the collective bumbling of the case management team, we don’t have the equipment we need to go home. Specifically, we don’t have a suction pump. I find it exceedingly fitting that a thing that LITERALLY SUCKS is causing such a fucking nightmare today.
We may not be able to leave until Wednesday now. It is inconceivable that the insurance would rather pay $4000+ a night rather than expedite us getting a $500 suction pump. But I am through trying to be rational.
Thank the tiny baby Jesus with his tiny balled up fists that I married a rational man. He is politely getting after people. I am impolitely writing lists in my head of people to kick in the ear.
Boooo. Boooo. We are being held hostage by idiots and a true manifestation of suck.
I was up here at the hospital and not able to get down there, but my spies tell me that the Ike-a-saurus Rummage Sale was a hit yesterday.
I know I keep going on and on about it all, but really – we are just so lucky to have a community lift us up like this. We are just incredibly fortunate for the generosity and love and support we have. We've had it since before Ike was born, and the more I worry about fatiguing everyone with our string of crises, the more everyone outdoes themselves to help us out. It is truly phenomenal.
Thank-you, thank-you, thank-you.
Ike says, thank-you, too.
P.S. There is a rumor around here we may get to go home tomorrow! Fingers crossed that the medical supply company has everything we need despite the machinations of the Case Manager Who Deserves A Punch In The Nose. Otherwise, we may be kickin' old school in the Respiratory Penthouse for a few more days.
What does Ike say about that?
I don't smell that great
am covered in stinky milk
good problem to have
The doctors here on the regular floor are obsessed with Ike-a-saurus getting fortified breastmilk. Because he was a preemie they want him to have extra calories. And, initially, instead of listening to me, they were filling his belly with formula-fortified expressed breastmilk, via gavage through his nose, all night long. They wanted me to give him bottles at night, even after I explained he is not so much a fan of bottles, even less a fan of the gnarly Neosure formula they're fortifying the ebm with, and even less of a fan of being woken up and force fed. So when he refused the bottles – like I knew he would, everyone freaked and put the tube back down his nose. Actually, I got to drop the tube, in case he has to come home with it.
Ever done that? Ever snaked a tube down your infant's nose and into his stomach? Not fun.
So last night I said no tube. I asked them to give me a chance to breastfeed at night like we do at home. They could measure his weight in the morning and see if there was any big deal. They said OK to the no tube, but they still wanted me to do the fortified bottles despite my protests.
Well, we tried. A kick ass nurse got us a bed to share, so that helped with the breastfeeding, but because of doctor's orders (so many different doctors with different orders here – ugh), the night nurse had to wake us up every two and a half hours so that I could try to get my sleeping infant to take a bottle of fortified milk. Milk that he hates even when awake and starving. That was fun. And – surprise – he lost a little bit of weight. Maybe because after being constantly woken up he was too tired to eat. Sigh.
I also tried a supplemental nursing system, which was hilarious and messy and worked fairly well – but I tested it with non-fortified pumped milk because I didn't want him to suddenly start associating the yucky milk with my boobs. That would cause a whole new world of terrible.
They are going to make us bring him home with the NG tube I think. And that makes me crazy. This whole milk fortifying thing doesn't even have anything to do with the trach, it's just because he was a preemie. We've been going through this since the NICU – where they gave him my hindmilk instead of fortified milk because he tolerated it better.He has always followed his own curve with his weight gain – a curve that has pleased his pediatrician and never caused a problem. I would also like to ntoe that even though he has lost negligible amounts of weight pver the past three nights, he still WEIGHS MORE than he did when he came to the hospital. So there's that.
I could go on and on ranting and raving about this, but the more worked up I get, the sillier I feel. This is a problem I want to have. This is a problem I would have climbed mountains for 22 days ago when he was sedated and paralyzed in the ICU, with an extremely critical airway and plummeting vital signs.
This is a good problem to have. It is a welcome problem. I still want to punch some people in the face, but that's OK. I think for the next, well, forever, I might have some short-tempered anger issues to go along with my PTSD and anxiety. I will worry about that all later. Right now I need to worry about filling a tiny belly with as much mommy milk as it can take. I also have to worry about making enough milk to do that. (The domperidone seems to be helping, by the way.)
Having well-meaning doctors turn every night into an Amazing Race eating challenge for Ike-a-saurus is my main worry, though. Gonna have to get them to stop that. Otherwise I might jump on the them, put a trach in their throats, force feed them Neosure and see how much THEY like it.
Last year on this day, at about this time, I was on the phone with my best friend FREAKING OUT.
On my lap was a little white stick with two pink lines.
What a year it's been! I knew a pregnancy was going to shake things up but wow.
And even with everything that's happened… it's been a great year. Really.
The wee one has a little brother to make the butt of his fart jokes, the wee-er one has learned how to be a great big sister, my husband and I have learned so many things I can't even list them here.
It all started on this day last year.
Three kids. It still shocks me.
But in a good way.
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.
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.