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.