Tomorrow at 11

Tomorrow at 11 Isaac is having the brochoscopy. The ENT is very worried about his airway. There is a chance that during the procedure Ike could end up with a tracheotomy, or worse. They are preparing us for every possibility.

I am going radio silent to be with him. Please keep Isaac in your thoughts and prayers.

Ike-a-saurus update

I am home for a moment, visiting the other kiddos and eating some food. I just wanted to check in to let everyone know what is going on.

The tests came back from Infectious Disease and Ike does NOT have the flu. Even after three rapid tests confirmed both Influenza A and B, the true tests say nope. I don't really understand this, but the doctor tells us there is nothing to doubt now that the fancy test results are in. No flu.

There are other cultures out to see what virus he has, and a trach swab has tested positive for pneumonia. However, his lungs are fairly clear (as of now – knock on wood). He is being treated with antibiotics as if he has pneumonia, though. And it could be developing, we don't know.

It seems that the true problem is his airway. We knew about the laryngomalacia (floppy larynx) because of the stridor when he breathes. But our pediatrician was never convinced that it was just the LM causing the noise. Though even after being referred to two different ENTs, no one was willing to take a healthy baby into the OR to give him the bronchoscopy needed to see below the malacia to see if there was anything else obstructing his airway. At the time, this was fine by me. I didn't want him to go to the OR either, and if he was thriving we could live with the noise.

But the noise was getting worse and worse and then the runny nose hit, and congestion. He wouldn't eat and when we took him to the pediatrician Friday morning he suddenly turned very pale. His o2 was down into the 70s and our doctor called 911 to transport him to the children's hospital. I rode in the ambulance, forced to be up front with the driver, but I could see Ike in his car seat on the gurney in the back through a closed circuit TV. I could hear him, too. I watched the other EMT administer oxygen as we sped to the hospital. My husband was following behind us.

As a side note, I was very impressed that other drivers actually got the hell out of the way of the ambulance.

So we were at the ER for hours and hours while he was assessed. At that time, he was obviously sick, but OK. He wasn't interested in eating, but I could comfort him with a paci dipped in sugar water. They decided to give him an IV because he had been peeing orange crystals – not awesome – and a sign of dehydration. It was a toss up whether they were going to put him on the regular floor or the "intermediate floor" (with less kids per nurse and more monitors). They decided he was OK enough for the regular floor, so he was admitted and we moved upstairs.

We were there several hours and he was obviously getting worse. His o2 sat level had initially gone back up after they fit him with a canula, but then it started going down again. The mucus was so bad the nurses had to keep suctioning him with this huge vacuum thing. They started holding an oxygen mask along with the canula and even that wasn't helping. Various medicines were administered, nothing was helping. So they decided to move him to the intermediate floor (but only after an excruciatingly long time of bumbling med students trying to figure out what to do).

We rode to the intermediate floor with me on the hospital bed and Ike in my arms, with the respiratory tech holding his oxygen and monitors on the bed with us. 

We were only on the intermediate floor for minutes. I put him in the crib in the room and as soon as I put him down his sats dropped, his heart rate dropped and he turned gray. He was crying and wheezing and there were so many people around the bed. They couldn't get his o2 levels above 60, even when they were bagging him. So they pushed the bed out of the room towards ICU. We ran down the hall and they told me they were going to have to intubate. The last thing I saw was his blue/gray body, covered in wires and people's hands, with the bagging mask over his face. I could still hear him crying. That's when they made me go to the waiting room.

Thank goodness my friend Amy was with me. My husband had gone home earlier to be with the kids and I had told him everything was OK (because it was at the time) so he went to sleep. Even with the phones by him he slept through all my calls. Finally, Amy was brilliant enough to take my phone and call his sister, who drove to the house and banged on the front door, alerting the dog, who woke up my husband by barking.

So I was in the waiting room, completely freaking out. Keening is probably a good word. I was nuts. And Amy held me and tried to comfort me and I'm sure she is scarred for life now from having to see Isaac like that and then having to see me like that. I fucking flipped out. Flipped out. I haven't stopped shaking since that night.

Finally, a doctor came and told me that the tube was in. They had a very hard time with it. The correct size tube wouldn't fit and neither would the size smaller or the size smaller than that. It took a preemie-sized tube because his airway was so narrow. But they didn't know why it was narrow. Probably a congenital obstruction combined with swelling. It took them long enough to get the tube in that his heart stopped very briefly (less than a minute I was told) and they had to do chest compressions.

After they put in a central line, a foley, several other tubes in his nose and other things, I was allowed back to see him. By that time my husband was there.

Ike was – and still is – heavily sedated. They are paralyzing him to keep him from moving. His "critical airway" cannot be jostled at all because the tube is so tiny.

We are waiting for the infection(s) to get better now so that an ENT can come do a bronchoscopy and see why his airway is so narrow. It could be a congenital obstruction (webbing, a lesion) or it could be that his airway is malformed and needs to be completely reconstructed. We just don't know. We also don't know how the bronch will be done because the tube they use is bigger than the tube that fits in his throat – and both tubes have to be in place so that he can breathe during the procedure.

If they find an obstruction during the procedure they can possibly fix it. But we don't know if they'll be able to even do the procedure at this point. It's very confusing and scary.

So we are waiting. His o2 levels and heart rate plummet every so often while he's being suctioned or moved or sometimes for no discernible reason. We don't really know what's going on but the doctors and the nurses and the techs are doing everything they know how to do.

I feel like something inside of me has broken.

But being strong for Isaac is so important. When I talk to him he will open his eyes to look at me – even under sedation. Big tears fill his eyes. His shoulders twitch as he tries to move. Words cannot describe how it is to see your baby like that. People tell me to eat, to sleep, to pump. But how do I do anything? My milk supply is decimated right now. I have slept maybe four hours in the past two or three days. I try to come home for a few hours in the morning and evenings to see the wee one and the wee-er one and smile and be a happy mommy, but it is damn near impossible. The wee one asked if it was his fault because he goes to school with kids who have the flu. He said, "but I change my clothes when I come home!" And he does. I assure him over and over that this is not his fault. And now that we know it isn't the flu, that helps him understand, too. The wee-er one just wants Ike home. She doesn't understand why we keep coming home without him. I am not sure how a broken heart is able to break in new places everyday, but it can and it does.

We ask for prayers. Good thoughts. Vibes. Whatever energy you want to throw out into the ether. It is

A

Bad

Time

My husband continues to look for work, after being laid off on January 30th, but you can imagine how easy it is for him to concentrate right now.

Our community is reaching out to help and a website: www.ikeasaurus.com has been created to keep everyone updates on the things they are planning.

I don't even know what to say about this. It's just too much. So many people surrounding us with love and support… it feels undeserved, but we are very grateful for it. Very very grateful.

I am terrified for the future. Everyday something excruciating happens, and we haven't even gotten to the part where they attempt to figure out what's wrong with his airway.

I hesitate to post all of this. It seems so dire and personal. And, superstitiously, it seems like whenever I post something to the blog, something bad happens. But this blog is part of me. And with my community of mamas – and the community as a whole – reaching out to us, I wanted to write this post. I needed to get it all out. It's still not all out. But now you know the basics.

My baby boy. How did this happen?

Pediatric Intensive Care

Isaac is in the PICU, intubated. He was diagnosed with the flu yesterday, and after a 911 ambulance ride from the pediatrician's office, we spent much of the day in the ER. Last night they moved him to ICU to put in the tube.
He was blue/gray all over. They had to do chest compressions on my ten pound baby boy.
It is a terrible time. He is so sick.

Insides on the outside

flying through the air
in turbo-charged baby swing
instead of airplane

I don't think I've said this on the blog, but when Ike-a-saurus was born, he let out a cry, was whisked away for assessment, and a few minutes later the neonatologist came over to me. I was strapped to the operating table, wearing an oxygen mask, trying not to choke on my tears, and the doctor leaned over to me.

"Mrs. Roy?" he said slowly, making sure I was cognizant, gaining eye contact. "Mrs. Roy, I want you to know I am not worried about your baby dying."

And so there I was, splayed open on the operating table, after seconds, minutes, hours, days, weeks, months spent anticipating that very moment, it all had finally reached the point we had known would come. But we had not known when it would happen or with what outcome. So hearing the doctor say those words was probably one of the most defining moments of my life. All that terror and psychological torment for so long; all the not knowing, the never having any answers, the feeling of being a ticking time bomb for 8 excruciating weeks… it was suddenly over. And with those words I took the first reassuring breath I'd had in a long, long time.

We are almost 6 months from that day, and again I find myself in a place with no definitive answers. This noise Ike-a-surus is making sounds life-threatening. We were told that "babies who make this noise usually need to be intubated." But now, three weeks after the noise started, it is still terrible, yet he's still smiling. Some doctors are mystified, some confident. The confident ones are confident about different, opposite things. And I find myself with that feeling again – that sort of helpless "at the mercy of the universe" flailing around feeling.

So far this week Ike-a-saurus has been to the ENT, the pulminologist, the pediatrician, a second pedi-ENT, and has had a barium swallow rescheduled because the stupid COBRA doesn't kick in for another few days and I am not paying cash for that shit when it isn't absolutely necessary to have done right now. We know he has reflux.

The doctors have said everything from "it's laryngomalacia, he'll grow out of it." to "he needs a bronchoscopy and may have to go to Cincinnati for an airway reconstruction."

It's maddening and scary and exhausting and all the while he just gets noisier and noisier and I give myself stress-induced mastitis.

I think when I was laying on that operating table, guts splayed out for everyone to see, there was a part of me that didn't get sewn shut. A sort of frightened wound that can never be fully healed, except in that one second when the neonatologist was so sure, so blatant (if not eloquent) in his conviction.

It's a weird thing, but I find myself closing my eyes, remembering that moment in the OR. Remembering the dirty hand print on the ceiling (what?!), remembering how small the room was and how many people were in there, remembering the pushing and pulling and tugging on my body, remembering how it took every ounce of strength in my psyche to not go For Real Crazy while I was immobilized on that table, remembering the nurses counting tools to make sure nothing was left inside me.

I remember those moments and then I remember the words of the neonatologist and I wish I had a recording of him. I would play it when I get scared. I would just put it on a loop and listen to it on my ipod until we get through this laryngomalacia nonsense.

Today, the doctor said "he'll grow out of it. Further intervention is unnecessary unless he starts turning blue or losing weight." Not the most awesome words you want to hear, but by far not the worst.

So we'll listen to him squeak and honk and sound as if he's struggling for breath. But we'll watch his smiles and his fat little fingers and wait for him to outgrow this floppy larynx.

I'll trust that the doctor is right, even though I'm not convinced.

I've only been convinced by one doctor at one moment. It was a great and terrifying and blunt and welcome and confident moment.

I relive it everyday.

Priorities

barium swallow
not a glow-in-the-dark bird
though that would be cool

My Priorities For The Week:

A) Find a doctor who can make Ike-a-saurus stop sounding like this when he breathes: HORRIBLE BREATHING NOISE.

2) Find my husband a job

2b.) Find him a job that pays one million dollars, and includes benefits that don't cost 2 million dollars.

III) Pay attention to the other kids, even though I cannot hear the poor things talking to me over The Horrible Pterodactyl Noises Of Ike-a-Saurus (THPNOI).

four) Not go 100% fucking batshit insane

5) Try to focus on good things.

pre-5) Invent some good things.

F) Remind self that JK Rowling had to go on public assistance before she got filthy stinking obnoxiously successful. So, if self has to make that call for the fucking Lonestar Card, it is not a personal reflection.

7) Figure out how to tell Rick Perry that he is a gigantic cocksucking inbred blatently evil moron for a) threatening to turn down federal funds to expand CHIP in Texas and for b) saying if people were more "fiscally responsible" they wouldn't be in the shit they're in, economically. I do not have a font big or bold enough for the SUCK IT this requires.

VIII) Enjoy the science behind Ike-a-saurus' barium swallow on Wednesday, and not panic about it

9) Possibly compose a song, or make a remix of THPNOI, including Christian Bale's freakout and that Over the Rainbow song from every movie ever, by the Hawaiian guy with the really long last name.

J) Try not to go 100% batshit insane. Did I say that one already?

K) Stop repeating myself.

12) Finish this freelance job

13) Finish writing this book

XIV Is that numeral right?) Not get the flu

O) Remember to eat

16) Not get busted for blogging when I am supposed to be upstairs working

17) Be happy that I am not on Galactica right now

18) Let Wilco wash over me

nineteen) Alternatively, let Marilyn Manson do some of that musical healing, too

T) try not to go 100% batshit insane

Watching Brownie, eating beans, sending emails, sneezing

a full day today
tossing out widest of nets
must hook some big fish

Somehow, by accident, the wee-er one has discovered Barney. And even though she calls him Brownie (maybe she's trying to endear me to him?) it still makes me want to stab my ears with a railroad spike.

But she really likes good ol' Brownie, and it gives me time to work and eat real brownies, so who am I to complain?

I've spent a lot of time today getting in touch with former co-workers and bosses, trying to help my husband find a new job. It's a kind of melange of networking, desperation and howdy-do's. Strangely, it's kind of fun.

The desperation part is not so awesome, but it's fun to talk to people I haven't talked to in a while. It's interesting to catch up, and it makes me wonder what things would be like if I hadn't left the Fancy Working World to stay home and write and gripe and mommy (is it weird to use "mommy" as a verb?).

I know I made the right decision for me and for our family, and I love being home with the kids and writing books and freelancing. But every now and then I think about what it be like to wear those Ann Taylor suits again, and lunch with the muckity mucks. (Note to muckity mucks: this is a term of endearment, of course. And all my suits were donated long ago, so never fear.)

WILL BROWNIE NEVER END?

Really.

What is worse? Boxed lunches at a day-long meeting or Barney on an endless loop?

Well, now the wee-er one is dancing to the Brownie songs (in her Elmo underpants). I have to give her the edge here. A dizzy two-year-old singing "I love you," wins over Jason's Deli egg salad anyday.

And in a complete non-sequitor (this whole post, really, is scattered, isn't it?), here's an interview with me over on Haiku By Two. There is no talk of layoffs or hospitals or Barney. Thank goodness!

OK. Off to find more people, send more emails, eat more beans, grovel a little, and hunt down some real brownies. Brownies that don't make me want to stab my face.