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.

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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.

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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.

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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.

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Cookies and airways

I cannot say enough thanks to the mamas who organized and manned and baked stuff and made signs and stickers for the bake sale that was held for Ike today. I am stunned and humbled and I just don't know what to say. The community outpouring is too overwhelming for me to even comprehend. And it's not just my own tight-knit community – it's people we don't even know, from places far and wide. I can't begin to process it all. But know that we are grateful.

Tonight, it is my job to read the Red Folder. This is the "oh fuck, your kid just had a tracheostomy" information packet. (Why don't they call it that? You know that's what everyone thinks.)

The OFYKJHATIP has been sitting on the counter surrounded by the Emergency Trach kit and little bottles of eye lube (so that his eyes don't dry out while he's sedated and under the influence of the paralytics), and weird gum brush things and gauze and pump parts and a bowl of chicken noodle soup I saved from lunch, but forgot to save the spoon.

The nurses keep asking me if I've read the OFYKJHATIP and I keep telling them I need more time. Time to process, time to freak out, time to enjoy a brief moment of denial, time to worry that reading it will jinx everything and something terrible will happen. But I guess I better get on it.

At least while I'm reading it, I'll have some cookies and brownies and sourdough bread to eat. I hope I can eat, because this stuff looks really good.

He is Bradying right now. Dammit.

The night is over

After all of the excitement yesterday afternoon, last night was fairly quiet. Only two Bradys (heart rate drops) and both were with suction (they happened after the respiratory therapist used a tube to suck junk out of Ike's lungs) and he self-recovered from both. Having no Bradys would be awesome, but if he's going to have them, the kind he had last night were not as bad as the ones in the afternoon.

This morning, however, he has already had one of the spontaneous Bradys. These are new. He had not had them until yesterday and so everyone is kind of scratcing their heads, trying to figure out what's going on. The respiratory therapist had an interesting theory about Ike wrestling with the vent, but his solution can't be tested because of the paralytics they have Ike on (so that he won't move and wiggle the trach). The nurse has an interesting theory, dealing with the effects of the anesthesia from Tuesday, but again, he has to remain sedated and partially paralyzed right now, so the solution is moot.

My theory is a simple one – Ike just needs to poop. Trying to poop is causing a vasovagal response and that causes a heart rate drop. Yesterday, while all of the scariness was going on, I smelled little toots. Then the EKG confirmed the drops were most likely vagal-oriented. Ike has a history of having a difficult time pooping, so add it all together and there you go. Of course, to make him poop, they have to give him a suppository and THAT can stimulate a vagal response, too.

I am very unsteady this morning, but trying to keep my brain working. I feel like the doctors and nurses and therapists are very accepting of me as part of their team. They listen to me and respond to me and explain things over and over when I ask the same questions over and over. They are not defensive or arrogant when I question a choice that had been made, but they won't give in, either.

I really need to go home. I need to go see the wee-er one. I want to surprise the wee one by meeting him at school for lunch. I need a shower. I need a clean shirt. But I also need to be here so I can listen in on rounds. And I need to steady myself before I drive. Now that I've started getting a little bit of sleep at night I feel even more tired than ever.

I think maybe if I cry and then throw up and then take a nap I might be able to to regroup.

It's only 9am? It's only 9am.

He is having heart rate drops

And they don't know why. He's done it before, but always because of a vasovagal response from stimulus. This time it was a couple of hours of off and on bagging to keep his heart rate up. It seems to have everyone mystified.

I know everyone is already sending out good thoughts and prayers. We continue to need them. Ike-a-saurus really needs them right now.

I was silly to think that once the difficulty of the trach procedure was over it would be more a time of healing and figuring out what to do next and less a time of tenuous scariness. These past few hours have proven that things are still very precarious.

I should be sleeping

And I will be soon. I just wanted to take a minute to say that I have spent a lot of time this evening trying to catch up with emails and blog comments and Facebook comments and the Ikeasaurus website (so beautiful to see Ike on there, Jenny), and to pay some attention to my other two wonderful children who we are working so hard to protect against the scariness of everything…. I have spent a lot of time doing all these things in a kind of fog because of everything that happened today. But even through the fog I know you are all out there.

Ike knows you're out there, too. As they were pushing him in his crib down the hallway to the OR and I was following and trying to sneak kisses on his soft soft head, I told him about all the people wishing him well. I told him everyone we know and people we don't know are all surrounding us and loving us and doing everything they can to help us. I know he heard me.

It is all just so difficult to process. Not just the trach and the uncertainties around it. But everything. I am not sure how we have ended up at the center of this fierce mama maelstrom of love and generosity. It is something that humbles me and even frightens me a little. We have become THAT family. You know? The one you read about or see on the side of a tip jar or something. How are we that family? How did this happen? I never thought anything could be worse than being hospitalized for 5 weeks with gushing amniotic fluid and a ticking time bomb sensation of not knowing when or how early my baby would be born. I never thought anything could be worse than watching my 2lb 5 ounce baby have bradycardias in the NICU.

But I was wrong.

All of that… all of that was just training for this. We were training for a race for life we didn't know we'd be in. And I am so thankful for those experiences now. I know how to live at the hospital. I know how to question doctors and sit in during rounds. I know what food is good in the cafeteria (chicken fried steak) and what to avoid (baked fish. shiver). I know that my heart will shatter for the wee one and the wee-er one, and I know that they are strong and resilient. I know that some nurses will break the rules to make all of us more comfortable. I know that some will not. I know other people in the hospital are worse off than we are. I know some aren't. I know our families will drop everything to help us and to be with us and to keep the routine as normal as possible with the kids. I know that I will cry a lot and that's OK. I know I will distance myself my husband because I am worried about worrying him and I know that that will worry him more and ultimately bring us closer. I know that my ten year wedding anniversary is on Friday and that I have the best husband, spouse, partner, that anyone could ever have. I wonder how I can deserve him. I know all of these things because of last year, such a trying year.

I cry and I tremble with fear and exhaustion because I worry that all of the determination and willpower and strength that I mustered and borrowed and stole just to get Ike out of my belly and into the world safely came from a finite source inside of me. I worry I don't have enough left to get through this. So much more time in the hospital. Seeing my baby with a hole in his neck. Learning how to take care of him and it. Having more doctors visits and possible surgeries to figure out why his airway is so narrow. Having to explain it to the wee one and the wee-er one. Having to be a 24-hour nurse to Ike when I can barely manage to not put his diapers on backwards – under perfect stress-free conditions.

I am freaked out.

Really, really freaked out.

But tonight I am also really really grateful. For friends who are family and family who are friends, and for strangers who are becoming both friends and family.

I am grateful for all of you and for what you are doing for all of us.

I am humbled.

I am frightened.

And I have to go to bed.