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. 

Uh oh

Kara had a bad night last night.  She is clearly in a lot of pain again, and stopped eating.  She had blood tests that show her enzyme levels are not good.  Kara has been put back on the IV and is about to have a straight catheter.   She may have pancreatitis or something similar.  I will update you all as soon as I know what is going on.

We are not going home.

Little Kara

Heading Home

Kara will be discharged tomorrow around noon.  We will be using a special harness to strap her into the front seat of my mom's car.  It will take three people to lift her in place.  Kara has a reclining wheelchair that she will be using, and we ordered a new ramp for the front porch.

I really hope we are strong enough to get her into the house. 

P.S. I forgot to mention this before, but Kara came out of the operating room with a WHITE cast.  I requested a PURPLE cast multiple times, and asked for hot pink as a backup choice.  I am going to have to find some way to make this tolerable.  My sister is not going to have a boring, white cast that will inevitably look filthy in a few days.

Getting better all the time

We have seen a great improvement in Kara over the past two days.  After a blood transfusion, being placed on oxygen, and aggressive respiratory therapy Friday night, she has felt much better.  Kara's pulse is now in the 80s (down from 170-180 at the highest), her 02 saturation stays 97% and above, her hemoglobin and hematocrit levels are within normal parameters, and her edema is improving.  For the first time, her cast isn't tight around her abdomen.

Kara had her Foley catheter removed this afternoon and hasn't had albumin and Lasix today.  She has until 10:15 pm to urinate on her own to remain off of a catheter.  

Barring any setbacks, we should be taking Kara home Tuesday.

Oh bloody hell.

Kara's getting a blood transfusion tonight.  Her hemoglobin and hematocrit levels are dropping, she's exhibiting tachycardia, and her O2 saturation is low.  Since it's post op day 3, this isn't the best situation.

Kara is continuing to swell.  We've had to cut off her wristbands.  Even with all her setbacks, Kara has her spunk and has managed to learn how to pull out IVs and sabotage just about every barrier device that her nursing staff can think of.  And she still hits me in the face whenever I hug her.

Discharge isn't any time soon.

Thank you all for your support. Kara loves her wall of cards! It's nice to be reminded that people are with us in spirit.

Peace out, Ortho

Kara's recovery isn't going as swiftly and smoothly as we would have hoped so she is being switched from Orthopedic service to General Pediatrics.  This will allow physicians to really focus on her complications.

Kara's urinary output is still very low and her legs are tight and swollen.  Even with the catheter, she's not really improving.  She has blood tests and urinalysis every 6 hours to check her levels.  Kara is taking meds because some of her blood chemistry isn't the best and may need albumin to prevent fluid from collecting in her lungs.  If things don't improve, Kara may need diuresis.  She isn't eating normally, so it can be a struggle to get her to take her oral medications.  Kara worked with a respiratory therapist and received epinephrine and pulmicort, and now she can "talk" comfortably.  

Fortunately, Kara has had excellent and attentive nursing care.  If she steadily improves, she could be discharged by the end of the weekend...not that we know how to physically get her home. 

WE GOT SOME SLEEP LAST NIGHT!

Well, Kara did at least.  Me...not so much.

Kara's Contact Information

She's in room 3735 on unit 3 South at Lucile Packard Children's Hospital at Stanford, if anyone wants to send flowers or cards or stalk us.

You can make Kara a card with this link. The nurses can print your design and give the card to her.

Rough Recovery

Kara's surgery took about 3 hours.  Her femur was abnormal in shape so it had to be sawed and reset.  Now Kara will forever have a metal plate in her leg!  Everything went well.

But of course all cannot stay well.  Kara's recovery has been pretty taxing.  She barely slept last night and has had several screaming fits.  She's agitated and in a lot of pain.  Fortunately, Stanford has a great pain team so Kara has been placed on oxycodone every 4 hours with Valium, Ativan, and Dilaudid as well.  UNFORTUNATELY she's had no urine output so she just had a Foley catheter placed.

Kara has an adorable 8 month old roommate who somehow manages to patiently endure Kara's cacophony.

Tonight I will be staying with Kara, and it will be my first night ever sleeping in a hospital.  I've got Will & Grace and Barney DVDs to sustain us.

Pre-op

It's probably the big day.

Kara and Amy circa 1994

After a great deal of hassle, (canceling hotel reservations, re-placing hotel reservations, and Kara's endless screaming) we THINK Kara's operation should take place tonight around 7 pm Pacific.  She has had an IV placed for hydration.  We were originally told that Kara's operation would take place around 4 pm, but her surgeon had an emergency trauma case that bumped Kara back.

My mother, father and I are taking turns waiting with Kara since only two people are allowed.  Her operation should take approximately 2 hours.

It was SUPPOSED to be the night before surgery...

...but maybe not anymore.

Today the anesthesiologists at Stanford were supposed to call to take Kara's history and let us know when to arrive for her surgery tomorrow.  We received no such call.  After waiting until a little after 6:00 pm, I decided to call myself.  The ortho clinic was closed, so I spoke to an operator who transferred me to the Operating Room scheduling.  Apparently Kara is scheduled nowhere -  neither at the children's hospital nor main facility.

So when is Kara's surgery?  We have no idea.  But her condition is technically an emergency, so we are not happy.  The clinic opens tomorrow morning at 8 am, so hopefully we will find some answers then, and maybe even get her squeezed in tomorrow.  We have a hotel reservation for tomorrow night, and my mother and I have said we won't be coming in to work.  To prepare for the possibility that Kara will be able to have her operation tomorrow, we are giving her a chlorhexidine gluconate bath and won't be feeding her.

Stanford, you dropped the ball on this one.