Thursday, July 28, 2005

The longest day (the longest version)

Where were we?

Ah, yes. When last we saw our brave little heroine, it was Wednesday morning, and she was waiting at the Clinic for her day to begin.

And so it did. With the first page of the day. At the Hospital, you get to hear your name called on the intercom. A lot.

First, for Weighs & Measures: "Twinkle to the scales, please". Weighs & Measures is what Twink has always called the scales. Why? Because, you get weighed, and then you get measured. Every time. It seems a rather ordinary thing to do, in this extraordinary place. Have you grown? Are you taller? Until she was five, they even measured the size of her head every year. Today, the nurse has a pen that lights up when she writes, and a little Minnie Mouse figure standing on top. Twinkle pulls the matching Mickey pen from her bag. She puts on a little play for the nurse and I.

"Oh Mickey, I love you so much!"

"Oh Minnie, it will never work out, because you live in Hospital City, and I live in Twinkle Town!"

Mickey and Minnie "kiss".

Mickey goes back into the backpack, and Minnie goes back to work with the nurse, along with a smiley face pin.

X-ray is next. "Twinkle to X-ray, please". The X-ray nurses are X-cited to see Twinkle. Two of the three X-nurses have been X-raying Twinks since she was a baby, and they tease her gently as they take a series of pictures designed to show The Doctor X-actly what is going on inside with Twinkles bones. We wait for the X-nurse to tell us that all of the X-ray pictures are X-tremely X-ellent before we X-it the X-ray waiting room. We hand-carry the X-rays back around to the Clinic, which lets the Clinic staff know that we are X-ceptionally ready to see the doctor.

Lunch. Food is great; Twinks eats like I haven't fed her for days. Lucky for me the prices are reasonable (the Hospital cafeteria is non-profit) and food is filling.

During lunch, The Doctor stops by our table. "I knew you were in the building!" he says to Twink. "How?" she asks. "Because I've seen a whole new crop of your smiley faces, so I knew you had to be here, even before I looked at my schedule for the day!" They hug, and he teases her that she will soon be taller than he is. He looks tired, and for the first time in eleven years I notice the gray at his temples, the deep lines etched in his face. This is the man who made Twinkle walk; he performed the surgery that gave her the use of her legs and feet when she was only a year old. He asks if he can send in his Nurse Practitioner today and explains they are short one doctor today, so everyone has extra patients. I tell him that we'll miss seeing him later, but to tell NP we are ready whenever she is. He hugs me also, then hurries off to grab his lunch. Later in the afternoon, I see his cafeteria tray in the Clinic, on his desk. The food has barely been touched.

After lunch, back to the waiting rooms on the Clinic side.

"Twinkle to exam room 5, please". Off we go to exam room 5. As with the entire building, the rooms are cheerful, bright, and extraordinarily clean. Each exam room has a different set of objects glued to the door that corresponds to the room number. Exam room 5 is marked by five Frisbees glued to the door. We wait for perhaps 10 minutes before Nurse Practitioner breezes in. More hugs for everyone, and Twinkle gives her a handful of her smiley face pins so that she can give anyone who needs one a smile. NP pockets the pins, and tells Twink that she can already think of several people who might need one before the day is over.

Just as quickly as she came in, she changes gears, and we can tell that it is time to get down to business. NP talks to Twinkle, not to me; as the patients get older, they are given the responsibility of their own care, and Twinkle is now considered to be old enough to be a "partner" in her own care. This means she has to listen carefully to what staff members tell her, and she must be ready to answer any questions they may have for her. NP sits next to Twinkle, and goes through the standard litany; current list of meds, allergies, list of known medical "issues". Twinkle shows off the new Twinkerbell shoes we brought; NP admires them, and teases her that if she isn't watching, she might grab them for herself. Now the smile fades from NP's face.

NP: Twinkle, The Doctor has looked at your X-rays. He said to tell you that there is good news, and bad news.

Twink: OK

NP: The good news is that your leg length discrepancy is not getting worse. In fact, The Doctor says you can try to go without an external lift for now if you want to. Your recent growth spurt evened you out a bit!

Twink: WooHOO! No more lift, uh-huh, it's my birthday...

NP: But, Twinkle, the bad news is that The Doctor is really worried about your feet. I know you don't remember, because you were a baby, but you do know that The Doctor operated on you when you were a baby, right?

(Twinkle, now quiet, nods yes)

NP: Well, the problem is that all those little joints in your feet, every single one of them, are inflamed now. That's what is causing the pain. Do you understand what inflammation is?(Twink nods yes again)

NP: You have arthritis in both of your feet, Twinkle.

(NP turns to me for a moment) You'll be glad to know that it's not Juvenile Arthritis, but rather osteo.

(Np turns back to Twinkle) So, what is happening is that every time you step down, all of those joints in your feet hurt because they are inflamed. They are inflamed because before you were born, your feet didn't grow right. Because they didn't grow right, the joints don't work right. They don't line up like they should, and they don't flex and work like normal joints do. Twink, it doesn't matter what The Doctor does, those joints aren't ever going to be right.

(Twink swallows hard, but nods. She's sitting on the edge of the table, the feet in question are swinging back and forth. I'm standing, but suddenly realize I should be sitting, and drag a chair over to the end of the table)

NP: The Doctor wants to operate on your feet, Twinkle. He wants to go in there, and fuse all of those joints from here (she indicates where the toes meet the foot) back.

The room is completely silent for moment. I remind myself to try and breathe. A single tear slips down Twinks face. She gets it, she already knows what the answer will be, but she has to ask.

Twinkle: So I'll be able to walk, but I won't be able to...

NP: It will be like your feet are frozen. They won't be able to bend, or flex at all. All the joints will be fused. Once all the joints have been fused, it should eliminate most of the pain you are having whenever you stand or walk. But it can't be undone, Twink. The Doctor said that it is very important for you to remember that.

Twink: But I will be able to walk, right?

NP: Well, not like you can now. It will be different.

Twink: When do I have to have the surgery?

NP: The Doctor wants you to think about this - a lot. He wants you to do some more growing, too. If he does this operation before your feet are done growing, it might cause some other problems, so you have to be a few years older before we can even do the surgery.

(Now I'm the one trying not to cry. I can't stand the thought of Twink suffering with every step for the next four to six years)

Twinkle: (brightens) So I don't have to decide today?

NP: No - we don't want you to decide today. Today, we just wanted you to start thinking about it. We want you to know that there is something The Doctor can do, but not until you are done growing. You have to think about this, Twinkle. It's a big decision, and we want to make sure that it is the right decision for you.

Twink: But it still hurts until then. Why can't we do something about the hurting part before I quit growing? Like NOW?
The discussion turns to Twinks braces. The NP is worried that current SMO setup (small braces that extend just a few inches above the top of her high-top tennies) is not the best thing for Twinkle. NP tells us that Twink needs to obtain "maximum flexibility" in her feet and lower legs; this will help with (ultimately) post-surgical recovery and in the short-term may help her feet to function a bit better. So, an order is written for PT/Rehab.

While acknowledging the need for PT/rehab I also ask if the braces can't be extended somehow, to enclose her foot more fully and hold it in place better. NP says that the concern is that the foot and ankle may atrophy further than they already have. I point out that the shorter SMO is not doing the job we need it to do; if I understand the primary issue, we need to hold her foot steady and still; that should (in theory) help reduce the amount of joint movement, which should (in theory) reduce the amount of pain. NP agrees, and the option of a hinged AFO, which will go up to just under Twinkles knees, is agreed upon after talking to Twink about the seriousness of doing her rehab daily.

Finally, NP wants Twink to try and use the wheelchair as little as is possible. She is worried that Twink will sit down and never get back up. We talk about when Twinkle should use it, and Twinkle agrees to try and use it as little as possible for the next three weeks. NP gets ready to leave, and schedules Twink for both PT/rehab and O&P to be fitted for the new braces. She hugs both of us again, and moves to the door. "Let's go show off your new shoes".

Twink and NP head off to the hallway where the doctors and nurses offices are, and an impromptu fashion show is held. The nurses cheer and all agree that the shoes are "the cutest ever". The Doctor steps out of an exam room to see what has caused all the commotion, and another brief fashion show erupts, with Twink strutting around showing off the new Twinkerbell footwear. The Doctor flashes a big grin and a thumbs up, and returns to his other patient.

We leave the exam rooms, and Twink passes by the Toy Bin. She peers inside to check the quality and quantity of the toys. Back to the waiting rooms.

PT/rehab: "Twinkle to rehab, please". Every time we go to Rehab - every time - we see the fruits of their labor. It is awe-inspiring to see all of these children who were never supposed to be able to do (fill in the blank) all busily working on their own personal miracles. Today, it is also crowded. We wait on the big elevated mat, and after a bit our Physical Therapist brings over the new set of exercises for Twinkle to learn.

There are six new exercises. Each one designed to work a specific set of muscles. Each one, 10 reps, twice daily. I lay next to Twink on the big mat, and we practice together. The PT shakes her head in wonder; she doesn't understand that we are laughing so that we won't cry. We take the Thera-Bands, the instruction sheets, and head back to the Clinic waiting rooms again.

A different voice announces for Orthotics & Prosthetics: "Twinkle to Orthotics & Prosthetics for Hugs & Kisses, please". Away she goes, down the familiar hallway like a shot. She rounds the corner into O&P and runs right into Big. Big is a giant of a man, with a booming laugh, an irrepressible smile, and a big old soft marshmallow heart. Big sweeps her up into a hug, sets her down, and they take off, hand-in-hand for a "table with a view". Big has been making Twinks braces since her first pair; over the years he has literally helped keep her and thousands of other children on their feet. Big leaves to grab Twinks chart, and J zips into the room. J has also worked here since we can remember; he comes in to tell Twinks that he will be moving away soon, to work at another Hospital. Big pops his head in, and tells us that he tried to warn the other Hospital, but they still hired J anyway. Amid the laughter, J asks if he can make Twinks brace - it will be his last project here, his swansong. Twinks asks Big if it will hurt his feelings. Big gives a huge theatrical sigh, and tells her that it's OK, because unlike J, he isn't going to move away and leave his best girl behind.

During all the joking, J and Big have been expertly making a mold of Twinks foot and leg. They put cotton stockinette over the skin, and then wrapped it quickly and snugly with fiberglass cast rolls. When the fiberglass has set completely, they mark it, and slice it once up the front from the toes to the knee, and pop her leg and foot free. Big marks the mold with her name and patient number, and the date we will return for her new AFO brace. Later, the mold will be used to create an exact replica of Twinkles foot and leg; they will actually mold the plastic of the brace onto this, so it is truly a custom-made brace. J now turns to the business of quickly checking her existing SMO; it requires a few adjustments. He compliments her on the number of stress marks in the plastic. J knows that means she has been wearing it faithfully; he tells us how often they see kids who never wear their braces - and never get better. The lesson is not lost on Twink. Big brings in a new "potato chip" for Twinks SMO; it is a soft, custom-molded foam piece that resembles a Pringles chip. It fits into the SMO and protects the top of her foot where it meets the ankle and the Velcro strap goes across.

Big and J give more hugs, and while I pick up more paperwork, Twink hands out more smiley face pins.

We are the last patients out of the Clinic on this day. We pull out of the parking lot, and escape Hospital City not long before evening rush hour begins.

Twink sleeps most of the first half of the way home. I don't notice much of the scenery today; I seem to be driving on autopilot across these roads that we have traveled so many times. My brain is numb with shock, I suppose. I'm still trying to absorb the news; digest the fact that the fusion is the best option, and will be so... permanent. The Wrench and I aren't novices; we have always known that her feet and legs will never be normal. We have been grateful for all that The Hospital has been able to do; although not "normal", her feet and legs are still much better than they were at birth. But this was still very hard to hear today. I try to imagine how her feet will work after the surgeries are complete; will she walk like a robot?

How do you walk if you can't bend your feet?

In three weeks we will go back so that Twinkle can be fitted with the new AFO. I'll have a list a questions for The Doctor, but I can find no comfort in this thought.

Twink wakes up as we are entering the hill country. The sunset is red, gold, pink, blue, and lavender; no mere camera can capture the intensity. The high, wispy clouds drape across the deep blue of the sky and reflect the incredible glowing colors of the setting sun. As the landscape melts away into the coming darkness, we top the first of the smaller mountains. I hear a hushed voice from the back seat: "Look, mama - it's the purple mountains majesty!"

We continue on towards home; we are down from the hill country, and the last faint glow of the sunset has faded. Now the darkness hugs the warm earth, interrupted only here and there by porch lights and headlights. Finally the city shines in the distance, familiar buildings made glamorous in their shimmering night-time attire of twinkling lights. We skirt the edge of the city on the outer loop, sailing around to our neighborhood. The expressways are nearly empty, the side streets almost devoid of traffic.

We are home. Unload the van, greet the cats, hug The Wrench. Read the mail (both e and snail) and collapse into bed. Tomorrow we start our new rehab routine, and we start crossing the days off of the calendar until Twinkle gets her new brace.

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