second verse

(from 5 days ago)

We are still in the PICU, but maybe not for much longer. Annika is really doing much better. Her arms are all shaky, and there seems to be a lag in her understanding when I ask her to do something. This meant that there was an unfortunate incident this morning involving a plastic tub of maple syrup and the blue caps of her PICC line.

Let's just say that extreme shakiness, highly sticky substances, and dangling ends of intravenous access lines do not a fortuitous combination make.

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(from 4 days ago)

I have a whole morning routine worked out for when we're on the 6th floor here at Children's. The very first thing I have to do is take a shower. Annika pretty much insists that I get my hair under control before the hallways get really busy, because I have gravity-defying morning hair. Of course, her hair is even worse in the morning, but she thinks her own hair is funny and cute, while mine is just embarrassing.

Of course, she's right. Yet another of the many advantages of youth.

I always grab exactly three towels on the way to the parents' shower. The towels are kind of small, so I always use the first one on my hair and face and then drop it to the floor to use for my feet. The second one finishes the job, and the third one is just for in case.

You don't even want to hear about the things that have happened to ensure that I always bring a just in case towel.

This morning, for the first time in years, I changed my routine. Because, for the very first time in over 7 years at 7 different hospitals, the towel I grabbed off the top of the pile to dry my face felt soft. Really soft!  In fact, not at all like white, bleach-scented sandpaper, but something more like, well, the only description that comes to mind is more like a towel!

As I blotted my face, which was not at all turning red because the first several layers of epithelials were not at all being removed by stiff cotton terry loops rigid enough to top a minimum-security prison fence, I decided that I couldn't bring myself to drop this amazing find on the wet floor like a common rug. Finding a soft towel on the linen cart is the holy grail of hospital stays. The chance of finding a soft towel is roughly the same as that of being struck by lightening on the golf course after you've just hit a hole in one with your right arm tied behind your back while simultaneously demonstrating to all your friends that you do, in fact, know the second verse of The Star-Spangled Banner and can hit the high note perfectly, even in the key of B-flat.

Yes, that rare. I mean, nobody knows the second verse.

I briefly considered tucking it into my bag and setting up an auction on eBay, but decided that I couldn't in good conscience do that, even if I did donate the proceeds to finance 2 floors of the new hospital Children's is building downtown.

Still hugging that towel, still in shock at my find, I blindly reached over and dropped a fresh towel onto the wet floor.

Then I stared down at the floor, barely able to believe what my fingertips had just told me.

Gingerly, I stepped out of the shower enclosure and onto the towel. Then I wiggled my toes, and took a deep, steadying breath.

I was standing on yet another soft towel. Two soft towels in a row! It was like some kind of miracle: "The Miracle of the Two Not Completely Awful Towels."

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(from 2 days ago)

We are back home.

I know! We are all surprised, too. That is possibly the quickest trip from In-The-PICU-Prognosis-Unclear to Back-Home-Let's-Make-Some-Hot-Chocolate-And-Watch-A-Movie in the history of...forever, maybe.

I think we are mostly back home because I asked if we could go. On the other hand, they were also probably thinking to keep us close by (at the Kohl's House) because I was freaked out by the idea that this whole thing could happen all over again, with as little warning as the first time.

A few days ago, back when we were still in the PICU, and so had the luxury of being included in the discussion during rounds, I tried to use that time to gather as much information as possible about what the doctors thought had happened to her, and how in the hell we could avoid that ever happening again. Unfortunately, doctors' rounds in the PICU is not always the best place to get that kind of information, given that including parents in the discussion (mostly as audience, for some docs) is a relatively new idea, and most of the discussion has to do with the immediate medical situation. The PICU is not a long-term thinking kind of place. It's all about how do we get this kid through today, and once she's stable enough for the long-range questions to come up, then it's probably time to move her out of the PICU.

It's one of those little quirks of medical life that the one place where you are most likely able to speak to a doctor about your child's condition and plan of care in great detail (the PICU), is also the place least likely to entertain the types of questions that I think come most naturally to parents, which are mostly questions all about the future. And by "future," I mean the Big Questions like, "Is it crazy for me to keep dropping hints about the importance of college into casual conversations with my kid?"

Anyway, so I marched myself out into the little enclosure where the team of doctors (liver and intensive care) congregated to listen to the recitation of Annika's current medicines, latest lab numbers, and vitals from the past 24 hours. Afraid I would miss my chance, I kept butting into the discussion in a way totally unlike my usual protocol-and-authority-respecting self.

After hearing that the general consensus was that this episode was triggered by another G.I. bleed in combination with a bunch of other factors (her slowly failing liver, the shunt which directs blood flow around her liver, maybe some other stuff we don't even know about), I wanted to know what was special about this G.I. bleed. After all, she's had some 20 really big bleeds, and maybe another 20 smaller ones (and who knows how many little ones not even big enough to notice), and nothing even remotely like this has happened before.

More to the point, I wanted to know how we could avoid that ever, ever happening again.

And the G.I. doctor, with an incongruously large smile on his face, the same smile that always has me labeling him "The Optimist" on the team, told me that there was no way to avoid it happening again. In fact, he explained, once you've seen it happen once, it makes it more likely to happen again.

Something about niches or patterns or something. Honestly, I don't remember.

Because at that point I was remembering the conversation I had had with the neurologist that morning, when I asked him what we needed to be prepared for if this should happen again, if we should worry that she would be in danger of increased cerebral pressure if there were a next time.

"Absolutely, yes. That will be a possibility."

Those two conversations were clanking together in my head, sliding together like iron jaws. Yes, this is likely to happen again. Yes, it will be just as dangerous next time around.

I thought about how often she's been having bleeds since they started up again this summer, and wondered how long we would have before testing out her body's reaction.

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(from today, I'm hoping)

I keep noticing little things, and trying not to panic. It's taking up a considerable amount of my mental resources.

Annika, sitting and staring out at nothing, until I notice and call out, my voice too tense, "Anni! What's wrong?" And then her head will slowly swivel toward the sound of my voice, her eyes will focus, and she smiles, as if I must be joking.

Annika, confused when I tell her to turn  off the light switch. "Is that, um...is that...(clicks her tongue on the roof of her mouth)...do I push it up? Or, no. Down? Or is that...(clicks again)...um, I'm not sure."

Annika, sitting on the floor, rubbing with a paper towel, when I had asked her to wipe off the chairs and swipe the crumbs on the floor before I came through with the broom. "Oh!" she exclaims, "Sorry! I didn't understand!" when I repeat the instructions, more carefully.

Annika, shaking so hard the soup splashes off her spoon before it reaches her mouth. Undeterred, she pokes a straw into the bowl and slurps it all up.

Annika, still Annika.

Give it a month or two, the neurologists said.

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On the evening we were to leave the PICU, Annika woke up from a nap with a horrible headache. She was crying, and I was worried because she never has headaches and she almost never cries about pain.

We paged the doctor to check her out, since her rapid decline of a few days ago had begun with inexplicable weepiness.

After a while, Anni pulled on my sleeve and whispered in her voice still roughened from the ventilator''s endotracheal tube, "Do I have what Hannah had?"

I held her and hugged her and we both cried together. I assured her that there was absolutely no way that she had a brain tumor, given how carefully all the doctors had looked at images of her head over the past few days.

I think I comforted her.

I wish I could have told her that nothing was wrong, that everything was fixed and fine.

I don't think she noticed that I didn't. Leaving the PICU was enough for her.

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When we pulled into the driveway, Jörg came out of the house and pulled her up into his arms.

"I'm so happy to see you, sweetie!" he said, and nuzzled into her hair. Then he added, "I'm so sorry you had such a rough time at the hospital."

"Oh, it's OK," she reassured him. "There were some fun parts, too."

Then she went inside to give Frankie the presents she had selected for her from the hospital gift shop.

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Nobody knows the second verse. Nobody ever does.

We're all just humming from here on out.

Comments

[Kathryn]

((Moreena)) ((Anni)) ((Jorg)) ((Frankie))
Thinking and praying.
Thank you for the updates...

[jeanie]

Oh guys I so so so so hope that the keel rights itself - and soon - and the optomistic doctors are blown away by your darling's move forward.

[Amelie]

Many hugs to you all.

[Ginny]

So glad you are home, and holding out hope, and prayers, for you all.

[Shelley]

I have no words, Moreena. Just hopes, prayers, and a wish that there was something I could do. We have been thinking of and praying for all of you.

[Lauren]

I hope that Anni surprises her doctors (and you guys) in the best way possible!
I'm praying for her all the time!

[paige]

Still praying, still hoping.

You and your family are amazing and wonderful.

[Laurie]

So happy to hear that you girls are home. Hot chocolate and soup sound perfect. As always, love and prayers for all of you.

[Val]

You all remain in my prayers.

[Phantom Scribbler]

Thank you for allowing us to hum along with you.

[Catherine]

Oh, Moreena, what a beautiful way to weave together the crazy-beautiful, crazy-crazy pieces of your life for us. Thank you. Your family is now, as always, in our thoughts.

xo

[kathy a.]

keeping you all in our thoughts, too. xoxoxox

[Mandee]

So glad that you are home. Lots and lots of prayers still coming your way!

[ppb]

This is all going to be a book someday? right? Because I've never met your child and I'm in love with her spirit.

Holding you in the light.

[mb]

I'm glad you're home. What an amazing kiddo you have ("there were some fun parts, too" made me cry). Hoping for the best.

[bj]

"I've never met your child and I'm in love with her spirit."

Me too, Morena. She is a joy.

[Academic]

Welcome home. Still praying for you and your family.

[kathy a.]

anni is fabulous! and so are all of you.

i keep coming back to different parts of the post. i love the miracle of the towels! can only imagine the maple syrup incident. love the straw! my heart breaks thinking of annika worrying that she might have a fucking brain tumor. LOVE that she remembers part of it all as fun, and even more her happiness at going home! and oh, the worries you are holding; there are no adequate words, but you hum very well. xoxo

[Annika]

I am sending love. And damn it, I am going to memorize that second verse.

[elswhere]

Thinking of you all. Still, always.

[Mary O.]

I'm glad you got soft towels, what a treat. I wish I could fix Anni for all of you. My prayers are with you.

[Liz]

I'm thinking of you all and praying.

[Lee]

So glad to learn you are home!

"Undeterred, she pokes a straw into the bowl and slurps it all up."

Love it!

[Susan]

Hugs for all of you, Moreena.

[vanessa]

I dont have any insightful comments, just prayers. And hope, and virtual hugs.