SHE WALKS

Kara is doing WONDERFULLY in physical therapy!

Sitting up!

Kara has been out of her cast for a little more than 4 weeks, and is finally strong enough to sit up!  She still can't move her left leg at all; it is far too weak.  Also, her left ankle is curled up with atrophy.  Fortunately though, Kara got her physical therapy orders and will begin next week.

Sitting up all by herself on the exam table!

I tried to get Kara to smile, but she was not having it.

The cast saw is hilarious.

The cast is off.  Kara couldn't stop giggling at the noise and vibration of the cast saw.  Her scar is about 14 inches down the side of her hip and thigh, and appears to have healed nicely.  Unfortunately we found a small bed sore at her sacrum inside the cast.  There was no way to know of or prevent this sore.  It has already scabbed over.  

Kara had her first bath tonight and enjoyed splashing the water.  Her left leg is still yellowish from the Povidone-Iodine, and she's peeling like a snake.  I'm glad that she didn't get extra hairy, like a lot of people do.  

In four weeks Kara will have another follow-up appointment and hopefully then she will be ready to begin physical therapy. For now, we are just focusing on helping her regain the use of her recently immobilized joints.  She is in a lot of pain so she is back on her medication for a few days.

Giggling at the saw

Last day in the cast!

Kara should be getting her cast off tomorrow!  We will head up to Stanford and get some X-rays, and if everything looks okay, it will be time to saw that nasty thing off. 

Kara has been in her cast for over 8 weeks, and learning to adapt her care has been challenging.  She sleeps  and spends much of her time in a hospital bed in her room.  We have a camera on her so we can listen and watch without disrupting her.  Kara has her diaper changed and is repositioned every two hours, even during the night, to prevent pressure ulcers.

A couple weeks ago we fully weaned Kara from her pain medication, which let us take her off her 3 antihistamines too (she had a lot of itching from the oxycodone).  At first we were giving her no medication, but Kara would wake up in the middle of night and try to crawl out of bed, so she still gets Valium at bedtime.  This has been working wonderfully and she sleeps through the night. 

During the day, Kara spends some time in the living room on her Lovesac and can go outside in her reclining wheelchair.  We have a ramp now which is helpful.  

When we see Kara's physician tomorrow, we hope to get physical therapy orders to begin to restore Kara's range of motion and strength.  She will probably be sore and have pain with movement for about two months.  Weight bearing is far in the future.  If Kara does well during the Summer, she will be able to attend camp and return to school for the new year in the Fall.  Also, once the cast is off we will be able to let Kara sleep through the night and lifting her will be a bit easier, as the cast is probably around 15 pounds and the fiberglass material is hard to grip.  

Even though life has calmed down and we are in a rhythm, we are ready to be done with this phase.  I will post pictures tomorrow. 

Kara enjoys the sunny weather

Lounging in the reclining wheelchair

X-Rays!

Pre-op: Notice that the femur is not only out of the hip socket, but also completely misaligned.

Post-op: Hip back in socket!  Complete with metal plate and 6 screws holding the femur together.

COUNTDOWN

Kara's cast-off date is June 2.  Her orthopedic surgeon examined her today and said things seem to be progressing well.  Kara's non-weight bearing status has been lifted.  We are in the process of tapering her pain medication.

When the cast does come off, Kara will probably be stiff and guarded and won't move much for about two months.  She will start physical therapy to regain range of motion and possibly even her walking ability, though that is far in the future.

ALSO: We got copies of Kara's x-rays, pre and post-operative, and I will scan and post those later.

Her Royal Highness Hath Returned to Her Throne

Kara seems to like her new Lovesac Pillowsac.  It's a giant foam chunk-filled pillow, on a rocking base, that conforms to the shape of Kara in her cast.  She's got a sling for her hoist/lift, chucks in case she has an accident, and a foam boot to prevent pressure ulcers on her heel.  Kara also has a reclining wheelchair and a brand new hospital bed to accommodate her. 

Our family greatly appreciates the excellent care Kara received at Windsor Gardens Rehabilitation Center.  Her wonderful CNA had a hard time saying goodbye!  Everyone always loves Kara.

Homecoming

Kara will be discharged from the SNF tomorrow, which is exactly 4 weeks after her surgery.  She will be coming home.

Kara has her first follow-up appointment with Orthopedics on Thursday.  Hopefully we will get a cast-off date so we can count down.  I also would love to see an x-ray of the metal plate and screws in her femur.

No more hair

More news!

Kara was approved for another week in the SNF.  She still has no roommate, which has been nice.  She had blood drawn today, and her liver enzymes continue to be elevated.  Hopefully this is not indicative of any new or yet undiscovered problem.

Our family brought an Easter picnic to Kara and spent the afternoon in her room.  Kara is very content and loves to play with her musical worm and octopus/sun/spider thing.  Today she even socialized during a "musical event" in the day room.

Tomorrow Kara will be getting a much needed haircut.  When she was in the hospital, she would thrash her head back and forth in pain.  Also, no one could brush her hair because she can't sit up.  As a consequence, Kara's hair is matted into one giant dreadlock.  It has reached a point of no return, and will probably be chopped off, which is particularly unfortunate because she has bald patches.

Finally, we have ordered a hospital bed for Kara's room at home, to hopefully make her discharge as smooth as possible.

Kara is very happy.

We are more than pleased with Kara's care in the SNF.  She seems happy all day, every day.  And Kara even annoyed her roommate away so she has her room to herself!  We haven't seen her this happy in months - meaning she was probably in a great deal of pain since her hip dislocated in December.  Hopefully Kara will only continue to improve.

We have never had the same skin tone! (This was probably when Kara was two and I was five or six.)

Kara has left the hospital!

Kara was discharged this morning around 10 am, and is now in a rehabilitation facility in Salinas.  At first it was overwhelming to leave a 19-year-old somewhere designed for geriatric patients, but the staff were warm and accommodating and Kara was content with her new environment.  We decorated her wall and bulletin board and brought her toys.  The nurse in charge of admissions told us that she is from Ohio where she worked in a residential facility for developmentally delayed minors and that she was very happy to work with Kara.  This definitely helped us relax.

Kara is residing in a short term rehabilitation wing, so the other patients seem to have their faculties intact and it really isn't the depressing environment I had anticipated.  Kara will be working with an occupational therapist and a physical therapist 5 days a week, so hopefully she will regain some of the skills she has lost throughout this whole ordeal.

As of today, Kara has only been approved for five days in this facility, with a discharge date of Tuesday, April 26.  Since an extension until her cast is off is unlikely, we are preparing our home for her to return soon.

And yet again we wait

Kara's placement is still not confirmed, so she has not been discharged.  IF everything is approved, she will likely be transferred tomorrow or Friday.  If not, she will come home.  Once at home, Kara will officially be ineligible for any skilled nursing or home nursing in the future.

We have a broken system.

Nevermind?

JUST as we are packing up to leave...in walks Kara's case manager.  We have a placement as of tomorrow.  So Kara will NOT be coming home, but rather will go to a skilled nursing facility.  It's not one of our favorites, but it's a start.

We will still keep our eyes open for a better facility if necessary.

Mission failed

As we keep getting rejected by nursing homes, we asked Kara's case manager to look for in-home nursing care to help us out.  Apparently there are no available caregivers anywhere in Monterey county.  So we are out of options.  To make matters worse, Kara just got a roommate that is screaming which is making her cry.

We are going to try to get the hell out of here tonight and just bring Kara home and see what happens.  Hopefully I won't have to quit working to help my family, but I don't know how we are going to do this.

No one wants Kara.

Kara keeps getting rejected by facility after facility.  We have two new places in mind that our case manager is currently pursuing.  Fingers crossed!

Kara has now been in the hospital for two weeks.  Her albumin levels are dropping again, so she's going to have a urinalysis to help find out what is going on.  Also, Kara's pediatricians looked at a scalp condition that she's had for several years now, and suggested Alopecia (all I could think of was Stan Sitwell).  A possible treatment is Rogaine.  My 19-year-old sister needs Rogaine and a nursing home.  Such is life.

Waiting, waiting, waiting

Kara is still inpatient at LCPH.  We are waiting for her to find a skilled nursing facility that will accept her. So far, all are either "full" or do not want someone disabled, though I find it hard to believe that Kara's disability would make her any more challenging than a geriatric patient with Alzheimer's or advanced dementia.  Anyway, until Kara has a placement, she will not be discharged.  Her recent blood tests still show elevated liver enzymes and she isn't quite eating and drinking enough, so she's still being monitored by her physicians.   

Since Kara is starting to feel better, she has begun trying to climb/roll out of her hospital bed.  And she has a new rule that her nurses MUST close the box of wipes as soon as they are finished.  And her curtain has to be closed enough to block her view of the door.  In other words, Kara is acting more and more like her old self every day. 

Some news that's hard to swallow

My lil' sis

First the good news:
Kara is doing better.  She had a urine culture earlier this week that grew proteus colonies.  She has had antibiotic therapy and shows no signs of a worsening infection.  For the past two days, we have been able to get Kara into a wheelchair to go for walks around the hospital.  We even went on the roof today!  If all continues to go well, we can probably get her discharged by the end of the day tomorrow.  Kara ripped out her IV today, and we were hoping that we wouldn't have to restart one, but she hasn't been drinking enough so she's about to get another one.  I'm not looking forward to this.

Now the less good news:
Even though Kara might be discharged tomorrow, she probably won't be coming "home."  Unfortunately, Kara has been demanding a level of care that is too much for three people to provide in the home.  She needs her diaper changed and her position to be changed every two hours, and it often takes 3-4 people to accomplish this well.  Additionally, Kara has had a lot of problems with edema, infection, fluid intake, etc., and transporting her to an emergency room if something escalates would be extremely challenging with her body cast.  Consequently, we are seeking placement in a skilled nursing facility (SNF).  We know a few physicians that could see her in this situation. Accepting that this is a necessary step for Kara's recovery has been emotionally taxing, but our family truly believes this is what would be safest for Kara while she is in the body cast.  We plan to bring her home as soon as her cast is removed, or sooner if her condition improves.  Please keep Kara in your thoughts and prayers through this unfamiliar and scary time.

Kara partying at the boardwalk with my friends Erik, Nicole, and Zachary

Kara being her typical mischievous and unapologetic self 

She's driving me crazy.

Kara has been continuously screaming for the 2nd night in a row.  She's on an intense pain/anxiety regimen right now, so I don't see how she could be that uncomfortable.  The worst part is that Kara keeps trying to sit up, of course to no avail because of her cast.  She has been struggling for the past 8 hours.  She leans and pulls and does everything she can to sit up.  Whenever anyone comes near her bed, she asks them for help to sit.  It's so painful to watch her try with all her might and to hear her yelps of frustration.  Sadly, I don't think her brain is capable of understanding that she just won't be able to sit for the next 2 months.

Note: Sitting is essentially Kara's favorite position; she has even been sleeping while sitting up for years.