Tanja power

Last night, in the early evening, Tanja moved to room 10 in the Trauma Ward, a step down from the ICU. It’s quite a different environment–less intensive, essentially.

In the ICU the rooms are glass walled and a nurses sits at a station outside the room where they survey the one or two patients they are responsible for. Vitals are monitored constantly and appear on a board in your room, at the nurses station and at the central hub.

The new ward is much calmer and feels more like a hospital rather than a hyperdrive spacecraft bound for planet health . The nurses are great–kind and responsive–and are responsible for a larger number of patients. The environment is calm, without that urgency that is so reassuring in one’s early days in the ICU but which progress and increasing health render gratifyingly unnecessary. It’s great to be able to track Tanja’s MAP in realtime hour after hour, day after day. But it’s even greater not to have to.

As part of this new life on the ward, Tanja is losing some things–her central line, her a-line, her catheter–and gaining others, like permission to have flowers in her room and a handy bedside commode. Oh, and a fantastic view, which, due to the C-collar’s restriction of her neck movement, Tanja has yet to truly enjoy.

One interesting thing we’ve noticed, as Tanja starts to see more friends and family here at the hospital, is the therapeutic effect these visits have, on Tanja of course, but maybe even more so on the visitors. It’s scary to hear about this person you know to be something of a dervish of activity–of hugs and hobbies and dance moves and constant motion– suffering a paralyzing injury. It is natural to wonder and worry about what she will be. Then you walk in and it’s Tanja, unmistakable in her energy and her outlook and it is a balm.

As I write this, she has been busting out bicep curls like prime-time Schwartzenegger and now has exercised herself into a peaceful slumber with a very thoughtful look on her face.

Oh, there’s lots of things: the c-collar is super uncomfortable and will be there for another five weeks, her G.I. tract has yet to shift out of emergency mode and is causing her much discomfort, her head wound is pretty sore. But overall, it has been a good day, a little better than yesterday, and the mood remains hopeful.

In an attempt to keep life toward the normal, I took Wren to a squash lesson today, one we’d scheduled with my teacher way back in the before times. After the lesson, I told the teacher what was up with Tanja. He listened, asked a few questions and then said, “She’s going to have a total recovery.” A ridiculous thing to say. But, as I think about it, I’ve never known him to be wrong.

Since arriving in hospital, Tanja has had a recurring dream in which she is wearing a very specific outfit which she described this morning.

“It’s rust brown corduroys, fine wale, cut like jeans. I’m wearing brown leather boots, like hiking boots, a brown long sleeve t-shirt in light, light cotton, a knit jumper over it, almost like a tube top with two inch straps at the shoulders, the color of the flesh of butternut squash.”

In his dream she is taking steps two at a time and is just her normal physical self. The color palette of her outfit makes her think it must be fall. Maybe this coming fall:)

The neuro guy came in this morning—that very focused, very capable man with the (no-doubt professionally necessary) ability to remove any scrap of unearned hope from his conversation. He ran Tanja through a series of motion tests that are measured, apparently, on a set numerical scale.

“These are fours,” he said, with a hint of surprise bordering annoyance. “You’re doing fours. They didn’t tell me you were doing fours.”

“Is that encouraging?” Tanja asked.

“What?” he said. “Oh yeah, big time.”

Tanja felt it was a victory to have forced this sphinx into saying something upbeat.

All the lying about, if that’s what Tanja has been doing, has led to dvts in her calves— little blood clots which are only a problem if they break loose and hit your lungs or, less frequently, your brain. Normally the treatment is blood thinners. Tanja can’t have blood thinners because they could compromise her recovery from surgery so her deep vein thrombosis will be treated with an IVC filter, a little wire basket lodged in the inferior vena cava between the clots and the heart. It is procedure, not rising to the criteria of “operation”—no general anesthesia, small incisions, directed by x-ray, if I’m understanding.

Meanwhile, she has achieved “ward status” which, when it first came up, sounded very much like she’d crossed some threshold in a frequent flier program, but which actually means that she is ready to leave the ICU as soon as there is a bed in Trauma Surgery.

This is good news, of course. But for us, so scared, so shaken, the people of the ICU have been heroes using intelligence, capability and teamwork to get us through the most dangerous thing we’ve ever faced. We love them.

When they do rounds, there’s a moment when the person leading the discussion says, “Ok, on to fast hugs.” And then they go back to the litany of fairly incomprehensible status reports delivered at pace.

First time I heard it, I thought, “Ok, these guys are compassionate but they are driven—there’s only time for fast hugs.” Turns out it’s a diagnostic mnemonic.

But the sentiment still holds. Fast or slow, hugs all around.

Between the fall and the surgery and the meds and lying in bed for six days while eating so little, somehow Tanja has gotten tired. She is totally off the “pressors”, and her BP is trying to find solid ground—that’s not medically standard terminology—so when the PT showed up today with this cool walking assist device, Tanja, on standing to use it, broke out in a sweat and turned distinctly green.

“ I have to push through this,” she said.

“You can’t push through a drop in blood pressure,” said the PT, laughing warmly.

Tanja managed some steps but it was clear she wasn’t going to be doing much more.

She was very discouraged by this and spent some time with furrowed brow before kind is assimilating it into her world view not as a failure but as a step forward. When you are climbing mountains there are ups and downs, and both are crucial, since you absolutely cannot have one without the other.

So she has spent the afternoon focusing on what she can do: eating. Her appetite has be vanishingly small but she feels like calories are related to energy, so she’s digging into a very tasty tofu curry and a protein shake, with sautéed spinach coming up in the next delivery.

Today Tanja has gotten her orders to leave the ICU and just needs a bed to open up in the step-down ward before she can leave. She’s nervous about going just because the people here have all been so kind and capable and caring—these three things in practice look and feel very much like love. And Tanja is a finely tuned two-way device uniquely sensitive to such things.

So respect and gratitude and admiration and thanks and, of course, love to the many, many professionals of Trauma ICU 8C.

It would be unreasonable to expect noticeable improvement every day. But here we are.

For starters, in a move that would flummox any baby I have ever met, Tanja sat down in and got up from a chair today—a regular, run-of-the-mill chair at that. She had some help, but minimal. Then she pivoted—not a pirouette but more of a three point turn—and sat down on the bed. It was epic.

Then the OT team showed up—this incredibly likable duo of young women who did a kind of Larel and Hardy routine with a heat gun and some thermoplastic, creating a handle form fitted to Tanja’s hand and attachable to any mug or glass she might want to use. No prevarication, no fear of setting up false hopes; they clearly expected her to learn to use it.

“You’re probably tired today,” one of the OTs said, gently. “Next time, we’ll show you some exercises.”

“I’m not that tired,” Tanja said.

She then proceeded to bust out 8 zero-gravity windshield wipers, a set if wrist activations, fist scrunches and individual finger wiggles. On BOTH SIDES! Granted, these are moves you could likely do without even thinking about it. But would grown adults clap their hands and cheer for you as these OT professionals did? It was thrilling: Chariots of Fire writ small.

The effort of all this pushed Tanja’s heart rate from a resting 60 bpm up briefly into the triple digits and reminded me, suddenly, of renowned video fitness instructor Autumn Calabrese.

As Autumn introduces a new “move” and the clock resets to a minute, she will often shout, among other blandishments, “You can do anything for sixty seconds.”

And I, dropping to the ground for stairclimbers or push-ups or burpees or up/downs or hip drops, can’t help but reflect on how demonstrably false that statement is.

But I’ve just realized Autumn is not talking to me. She is speaking to Tanja.

And thirty seconds later, when I am on my knees, sucking air and trying to get my heart back into my chest, I like to look over at Tanja as she rips through a set of whatever Autumn puts in front of her: her lips pursed in a certain way, her nostrils flared, her normally kind eyes fixed and steely.

That’s exactly what she looked like today as she willed her fingers to move. And one after the other, her fingers got the message.

Today’s news begins with furniture. Tanja is sitting in a chair! Rather a large, complicated chair, for sure, but a chair nonetheless. She couldn’t have done that yesterday, she’s doing it expertly today, and that dynamic, we hope, will be a theme moving forward.

We got to listen in on rounds this morning. You know on the medical dramas how the young doctor presents and the more senior ones listen carefully and make improving comments and the nurse weighs in with a detail that might have been overlooked and everyone is respectful and positive and just radiating competence? It was exactly like that, just calmer and more thorough, since there was no commercial break to consider.

A good deal of what they discussed was incomprehensible, but they seemed pretty satisfied and the very fact they invited us to listen seemed like a good sign.

The nurse practitioner came in just before noon for a neuro check and Tanja proceeded to show off with some pretty impressive elbow bending and thumb circling. Much spontaneously oohing and aahhing from the NP served to underscore the accuracy of Tanja’s baby metaphor. The progress is tiny but it is very exciting to see.

Appetite is up: mashed strawberries and oatmeal! Sleepiness is constant. All these baby parallels are piling up. I predict this one will be a handful when she stops napping:)

They’ve moved Tanja to a new room with a window and it was lovely to see her with the sun on her face. She’ll be there until Friday which is at the outside of the 3 to 5 days they forecast on Saturday.

But here’s the thing about that—underscoring what total lambs we are. She can’t leave the ICU because the bp-raising meds are ICU meds—they can only be administered in this setting. And the team is administering them for the five day max because they see the drugs are working. So this is good.

But one can easily imagine a situation where you’re out of the ICU in three days, congratulating yourself on the speed of your progress. And the docs shrug and wish you well.

There are so many things we don’t know. And it’s happening all around us.

It is said that every tribe needs optimists. The people who are, like, “let’s go eat that wooly mammoth. It’s big, we’re hungry, let’s go.” But they need the pessimist too. The person who says, “what if it comes at you? Maybe bring a spear?”

We are going with optimism. Not because we don’t understand this situation is bad—we get it. But there is no practical downside to optimism and all sorts of real daily and long-term benefits.

It worked on the mammoths. It’ll work for us:)

Tanja met with the physical therapist and then with the occupational therapist in the morning. It went well but it’s an indication of the journey ahead. Tanja is moving her arms much more than 2 days ago and considerably more than last night even. It’s awesome. But she is starting from a very low baseline so there remains a long way to go.

“Sobering,” was Tanja’s assessment of the OT meeting. It’s partially because, of course, nobody wants to say anything falsely hopeful. So when the OT tells her that her neuro orders state she is not to pick up anything heavier than a gallon of milk, her eyes light up and she says, “Will I be able to pick up a gallon of milk?”… and the answer is a safe prevarication.

But, to stick to the facts: she is noticeably stronger by the day. In fact, she was moving better at the end of OT than she was at the beginning. That’s pretty great.

There has been a ton of management today—of the meds elevating her bp, of the fluid loss caused by the management of the bp meds, of the side effects of those meds, etc. Jordan, the RN, is just so competent and patient and kind. It’s wonderful.

Jordan ordered food for Tanja and she actually ate a little soup and two or three bites of mashed potato. That’s a big step up from yesterday!

Then Jordan washed Tanja’s hair and got most of the dried blood out. And I combed it out as Tanja slept.

Now it’s quiet, Wren and Oak have gone and Tanja is asleep again. It was a good day.

You know her, you know she’s strong and determined, and you know how much she values her friends and family. This blog is not meant too discourage you from reaching out. Please! It’s just an easy place to get updates on what’s going on. Love to you all.

On Friday evening, 3/3, Tanja slipped on the stairs. Not a big fall, but she hit her neck and injured her spine.

She lost a lot (almost all) movement in her arms. We all need our arms, of course, but no one does more hugging and caressing and gardening and hammering and painting and wonderful drawing than Tanja. Everywhere I look in our house I see her touch.
So this is scary.
And there are no recovery guarantees. Still there are some promising signs. I won’t try to give you much medical science (because I don’t know any) but here’s why we are hopeful today.

Tanja’s injury is “incomplete” which is better than complete. Signals are getting through. And she has shown improvement, incrementally, since the accident. This suggests to the experts that she can continue to improve through rehab. Unfortunately, it will take intense, dedicated effort over time. Luckily, nobody is better at that than Tanja.

Other details: her legs seem really good. She hasn’t been able to test them yet because she is on meds to increase her bp (it helps gets blood and, hence, oxygen to the injury) and they don’t want her on her feet till she is off her meds.

She’s got some other issues around breathing and heart rate that are probably injury related but these are not big worries right this second. Her blood oxygen is in the 90s on room air which, as fans of medical dramas know, is great.

And her spirits are back! Yesterday was tough, obviously. Today she said, “You know what? I’m a baby. Babies can’t feed themselves. But then they work at it and learn how. And eventually they’re not babies anymore. That’s what I’m going to do!”

So, that is the plan.