No Trouble with the Curve

Kyra's body brace is off!  After four months of wearing her body brace, and being reclined at no more than a 30 degree angle, Kyra is now able to sit up and see the world without the curve of severe scoliosis holding her down.

June 21, 2013: Last "curvy" photo, with Curtis & Christa

The day her brace came off (Saturday, October 19), we were all a bit apprehensive.  The first transition to her wheelchair went fine... but was painful.  Kyra's hips and hamstrings, being immobile for four months, are very, very tight. Just lifting off her bed was difficult for her to bear.  We could see the pain in her eyes and the movement of her hands, but her face was determined, so we continued. And we were rewarded with Kyra's trademark smile as soon as she was secured in her seat.

October 19, 2013: No more trouble with the curve!

All day, we watched her heart rate, her eyes, and her breathing for signs of distress, and responded quickly when she had had enough sitting and needed to lie down, rest, and watch "Dark Shadows", surrounded by family, friends, flowers, and balloons.

Little by little, Kyra is able to sit upright for longer periods of time. Her legs are still very stiff, and need lots of stretching and physical therapy before she can sit comfortably.

But, she can sit in her wheelchair, her easy chair, and the car without falling over; she can move both of her arms freely; she does not have to depend on someone holding her up just to participate in the normal activities of life. In short, she no longer has trouble with the curve.

Peace.

Cat Naps

First day of school - post surgery.

We're three months down... one month to go until Kyra's body brace can come off for good! On that anxiously anticipated day, the celebrating at our house may be bigger than Kyra's upcoming high school graduation... maybe even bigger than the shin-dig being planned for Christa and Curtis in July.

It's funny how the time since Kyra's surgery seems like one very long day, and forever, and the blink of an eye... all at the same time.  Sometimes I look up from the post-surgical-care-stupor, expecting it to be mid-June, and see the school year in full swing, crops readying themselves for harvest, and Christmas breathing down my neck. A flashback to Rip Van Winkle.  Or an extended series of cat naps.

While Kyra's still restricted to being reclined at no more than 30 degrees, she refuses to stop trying, and never stops smiling.  Maybe that's because she's already doing some pretty awesome things:

• She's going to school two hours a day. She still has an incision wound and threatening pressure sores that require her to be in bed pretty much the rest of the day.
• She's practicing with her Special Olympics bowling team once a week.  Both of her shoulders and both of her arms are already steadier and stronger than they were before her surgery. This week, she bowled 116 and 76 (no bumpers allowed in Special Olympics)!  Maybe she's right-handed after all.
• She's using the GoTalkNow communication app on her iPad more independently. She's initiating conversations, answering questions, and combining concepts that even non-experienced helpers can understand.

She's also helping her sister pick out her wedding dress, assisting me with our new preschool Sunday School class, training new respite staff, doing evening chores with Dad... and sleeping.

This last accomplishment is one of the biggest. Kyra rarely sleeps for more than 90 minutes at a time.  I can count on one hand the number of times she has slept through the night since she's been born (these dates have gold stars on my calendar). But as she heals, she sleeps more comfortably, more soundly, and more deeply. Two or three or four hours at a stretch.  I often wake up in a panic after an hour or so, and have to check that she's still breathing.

Whit and Crosby. Professional Cat Nappers.

If this trend continues, Kyra and I will have to figure out what to do with this new source of renewable energy.  I'm sure there are plenty of worthy causes just waiting to help us use up our waking hours.

I'll miss the cat naps, though.

Peace.

Curing the Seven-Week Itch

Kyra’s spinal fusion surgery was almost 7 weeks ago, and we are both suffering from a severe case of 7-week itch.  Except for a quick visit to church, the trip to St. Louis for her post-surgical checkup, and attending her cousin’s wedding ceremony, Kyra has not left the house.  Her full-body brace, and the doctor’s orders that she be reclined at a 30 degree angle or less, makes it difficult to move her about, and the pressure sores and lingering incision wound have kept her in bed for days at a time.  In addition, our van could not accommodate her reclined wheelchair, so it took at least two experienced adults to transfer her from her wheelchair to the van, and back again.  In other words, Kyra and I couldn't go anywhere without help.

Yet, when the dog jumped into the open van door, and waited… and waited… and waited nearly 5 hours… for a ride, I knew it was time to dust off my “make do” skills, and get us all out of the house and back into life.

So, two friends, three days and lots of trials (and even more errors) later we were ready for a test drive.  With the back and middle seats removed from our Grand Caravan, we rolled Kyra into the back of the van on our re-vamped ramps, secured her wheelchair with two seatbelts and a chain, and took off for our first excursion: A private tour of the new Gilbert High School building.

An hour and a half later, Kyra was exhausted from the van ride, the school tour (complete with an elevator ride to the second floor and a sneak peek of the auditorium), and hearty greetings from faculty and staff.  As her face faded from an ear-to-ear grin to a slight smile, we knew it was time to go home.

All in all, we’ve had a successful first day back in the world.  We still have to pack and dress Kyra’s incision wound and watch carefully for re-infection, keep her reclined at no more than a 30-degree angle, roll her from side to back to side regularly to prevent further pressure sores, and administer medicines around the clock.  But somehow it doesn’t seem quite so daunting:  Kyra’s almost at the halfway mark to throwing away the body brace and sitting upright again.  I’m thinking that might be just cause for an autumn bon fire.

Peace.

Jiggity Jog

We're home!  Actually, we've been home since Saturday, adjusting to the new routines and requirements of Kyra's recovery.

We were so blessed to have Kyra's sister, Christa, and her fiancé, Curtis, at the hospital with us every day; yet, after 9 days of being harassed at all hours of the day and night by doctors, nurses, therapists, and every other kind of medical professional, it was time to go home and rest.

We are grateful to everyone that helped keep our home safe and intact while we were in St. Louis, and kept Kyra in their thoughts and prayers. We especially thank Alice, who babysat the dog, cats, kittens, horses and chickens; Lon who kept the lawn from becoming a jungle;  Grandma Joan, who tried to maintain order in the veggie garden; my employer and co-workers, who graciously gave me the time I need to focus on helping  Kyra get better; and the Chatham Anglers baseball team, who have been promoting Kyra's journey all season (see www.ChathamAnglers.com). 

We are also grateful for the help we have received since we've been back, from Mary and Grandma Joan running my errands, to a visit and prayers with Pastor Cathy, to Erin and Paul offering their electronic and construction skills as we equipped Kyra's bedroom with an entertainment center, and built ramps to accommodate her new wheelchair.

In addition, Pam and Kate have been helping me get Kyra in and out of her chair throughout the day, and Pam's nursing expertise is keeping a close eye on Kyra's remaining trouble spots, and keeping my anxiety at bay.

Kyra is still loopy from the pharmacy of pain medication she takes daily, and tires very, very easily.  But signs of the true Kyra are breaking through those drug-dilated eyes.  She INSISTS on having her High Point University baseball cap, red spatula, "Fiddler on the Roof" program, and Chatham Anglers team photo with her at all times.  I have hidden all of her shoes... Her feet are still too swollen to wear them, and her lap doesn't have room for any more treasures.  She smiles at Anya, her dog, who is never more than a few feet away, and rolls her eyes at me when I spill medicine on her bed.  Slowly and steadily, she will indeed win this race.

Peace.

Maybe Tomorrow

Since Wednesday, we've been hearing, "Maybe tomorrow you'll go home."  Today it seems to be true.  Kyra's been completely off oxygen all day, and is tolerating her pain meds well without being too loopy.  If she can stay off oxygen all night, too, we'll be good to go.  Then maybe we can get some rest! Hospitals are no place to sit around and relax.  Here's just part of Kyra's day today:

• A visit from Cinderella, Prince Charming, and Gus the mouse, who gave her a princess wand and pink bracelet.
• A stroll around the hallway of her hospital ward, making friends and checking out the artwork on display.
• An excursion to the hospital's rooftop garden, during which we watched transport helicopters land on the roof near us, and wondered what the blaring sirens and strobe lights meant (it turned out to be a false fire alarm).
• A Dairy Queen treat with Christa and Curtis to celebrate Christa's birthday.

Oh, and Kyra also had six sessions of respiratory therapy, as well as several visits from nurses, doctors, and Child Life staff, and a few cards to open and read.

Whew! We can't wait to get home and get some sleep!

Peace.

Fuzzy and Furry Day

Today was a fuzzy and furry day. Kyra had lots going on, including x-rays, physical therapy, respiratory therapy, and changes in medicines, as well as visits from the orthopedic team, the pain team, nurses, techs, and Dr. Brunstrom (her doctor from the Cerebral Palsy Center).  She's still pretty fuzzy-headed all day long, preferring to nap these memories away.

She's going to be a bit miffed with herself, though, when she realizes she missed the furry part of the day, a visit from Pepper, the touch therapy dog.  We took a few pictures with her and Pepper, so she can see that the hospital wasn't ALL bad.

Less is More

Today, Kyra lost a lot of things... such as tubes and IV lines.  But she gained some things, too, including another unit of whole blood (her third), an intense dislike for respiratory therapy, and a purple butterfly body brace.

With the body brace on, we were able to get her out of bed for the first time since her surgery, and into her reclined wheelchair for an hour.

Kyra also kept a few things the same today, such as her passion for "Fiddler on the Roof", and her cool E.T. finger.

Peace.

Out of ICU

Kyra made it out of ICU today, and onto the regular inpatient surgical floor. She slept most of the day... healing is hard work.

She's still working through some issues with breathing, heart rate, and blood counts, so your thoughts and prayers are welcomed.

Peace.

(Here's a pic of the "Christmas Tree" she's been hooked up to.)

Surgery Day Plus One

Kyra's spinal surgery took about 5 hours yesterday; she was in the OR for about 7 hours total. Her new back is beautiful!

Since then, she has been in the ICU, trying to manage pain and muscle spasms without surpressing her breathing too much.  A pretty tricky feat when you're already on seizure medication.

She also had a bit of a fever, and some gunky chest stuff that we've been working on getting rid of.

The hospital staff is superb, though, and extremely attentive. Kyra is in very gifted and compassionate hands.

Dr. Christa, Curtis, Celia, and Grandma Joan are here with us today. Along with a couple of thunderstorms.

She's doing much better this afternoon, so maybe she'll have to leave this ICU room with a great view of Forest Park, and onto the regular floor tomorrow.

Peace.

Intervention Radiology (IR) Day

Today, Kyra had a central IV line placed, at her right shoulder, that they'll use during her surgery and recovery to administer medicines, fluids, nutrition, and whatever else they might need. Having the line placed the day before surgery can cut down the time she'll be under total anesthesia tomorrow by about an hour.

We were at the hospital for about 4 hours, and it took Kyra another couple of hours to start smiling again.  Back at the hotel, we spent the afternoon watching Harry Potter and Chevy Chase Vacation movies with Christa and Curtis, playing "toss the surgical glove", and reading and re-reading Kyra's "Fiddler on the Roof" program.

Time for bed now... Tomorrow's going to be a very long day.

Peace.

Travel Day

Here's a picture of Kyra's day today... spent in our van, travelling to St. Louis for her spinal surgery. With the one stop we make at the Flying J in Wayland, it takes us 7 hours to get from our door to the door of the Pear Tree - Union Station hotel.

Here's Kyra's list of travel essentials:

• Cool sunglasses.
• Cuddly blankie.
• HPU baseball cap.
• Well-worn "Fiddler on the Roof" program.
• Spare "Fiddler on the Roof" program - just in case.
• Purple hippo.
• iPad loaded with PBS Kids and Amazon Cloud Player apps.
• Smartphone with wi-fi hotspot, so Kyra's iPad can stream PBS Kids videos and play favorite Cloud Player tunes anywhere, anytime.
• Sense of humor.  Actually, both Kyra's dad and I nearly forgot to pack this; thank goodness Kyra brought along enough to share.

As we drove through Wentzville, about 45 minutes from our hotel, Kyra stopped watching her movie and started looking out the window, giggling occasionally.  Her internal GPS had kicked in, and she was letting us  know that we were approaching St. Louis, and would likely see her sister, Christa soon.  I have a feeling it's  probably the last time she'll enter St. Louis giggling for awhile.

Peace.

Joyful in Hope Benefit

When Gilbert Lutheran Church first took on the challenge of putting together a benefit for Kyra, just six weeks ago, many people were skeptical.  They worried there wasn't enough time to plan and promote the event.  They worried there wouldn't be enough volunteers to set up, serve, and clean up.  They worried there wouldn't be enough silent auction and bake sale items to capture anyone's attention.  They worried the weather would cancel the outdoor activities and keep people away.

They shouldn't have worried.

The weather was perfect for the bouncy house, lawn games, pony rides, dog petting, nail polishing, and homemade ice cream machine.  With over 120 silent auction items, including autographed sports memorabilia, handmade quilts, crocheted items, baskets filled with movies, pet supplies, craft items, devotional items, barbeque sets, original watercolor paintings, stained glass angels, a hand-cut gemstone, a Turkish dinner, and more and more and more, everyone could find something interesting to bid on.  Additional tables had to be set up to hold all the bake sale offerings.  And the people came. 

The people came, and Kyra was overjoyed.  She showered lavish greetings on family, friends from school, friends from church, and friends from Special Olympics, horseback riding, and social service agencies.  She giggled and grinned at teachers, classmates, neighbors, mom and dad's co-workers, and relatives she's only met once before.  She shined all afternoon.

In fact, everyone seemed to shine as they enjoyed a good meal, played games, applauded an eclectic mix of music, held friendly bidding wars, added notes of encouragement to Kyra's wishing well, and chatted and smiled and spent time together in community.

At the end of the evening, the people that had done the planning, promoting, setting up, serving and cleaning up were talking together, exhausted and exhilerated.  These same people that had worried they couldn't pull it off now were saying, "That was fun! When can we do it again?"

What we learned today:

• People can do whatever they put their mind to.
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Pre-Operative Assessment Day

Kyra's pre-operative assessments were scheduled for two weeks before surgery. This series of appointments lasted about 5 hours, and included a bone density scan, spinal series x-rays, medical assessment with the orthopaedic nursing staff, exam and discussion with the surgeon, further medical assessment with the anesthesiology staff, exam and discussion with the anesthesiologist, and lab work. Then it was time for fun in the swimming pool with Dad!

What we learned today:

• The Barnes-Jewish hospital complex is BIG: Wear comfy tennies!
• It is impossible to lie completely still for 2 minutes... when you've just been told that you have to lie completely still for 2 minutes.  Looking at photos of friends, family, and pets helps.
• Elbow-length lead gloves are very heavy: It takes two radiology technicians to help Kyra try them on for size.
• Navigating hospital directional signage get easier with practice.  Even while speeding down ramps and yelling "WHEE!"
• Hospitals are cold: Bring a blankie!
• Hospitals don't break for lunch: Bring lots of snacks.
• My brain can hold only so much information at one time: Bring a notebook and pen!
• Kyra's surgeon knows what he's doing. What's more, he didn't make us feel stupid for asking the same questions over and over and over.  Like, will Kyra be able to ride horses again? (yes!) Will Kyra be in pain in the future because of the surgery? (no!) In fact, he seemed to get more patient with each question.
• The compassion of the 6th floor surgical reception staff is awesome.  I'm just sayin'.
• Anesthesiologists take their job very seriously.  Very. Seriously.  And, they have way cool technology that lets them monitor patient status with every heartbeat.
• Kyra is very brave.  Eleven vials of blood, and not one flinch.  Kudos to phlebotomist Tamika, who drew all of Kyra's blood with a single needle poke, remembered to use the fancy band-aid, and didn't even leave a bruise.