It turns out that the biopsy taken yesterday does indeed show rejection.  That's OK, though, as Natalie's LFTs improved today after one REALLY REALLY big dose of steroids last night.  So we'll continue this stronger dose until the rejection is no more.

 

Lots of visitors today...Natalie's Grandma and Grandpa Dempsey and Becca's cousin Shane and his wife Tina stopped by to see the Princess!

 

Natalie is doing well.  She spent the day playing with toys on the floor and as hard as we tried to keep her on the sterile playmat, she had other ideas and crawled all over the room!

 

GOOD NEWS...I always wait until the end to do this...If Natalie continues to do well, we'll be outta' here on Tuesday!!! (Out of the hospital anyway, and discharged to Kohl's house for a few weeks of monitoring.)  Pray that all goes well.

What a very busy day we all had.  First things first, she kept daddy up ALL night and then she took a 5 hour "nap" today.  Poor daddy. 

 

He's sleeping at the hospital with her and I am here at the Kohl's house.

 

Natalie is eating like a horse (well, a little pony anyway)!  For dinner she had some cut up pieces of chicken, 3 smily-face fries, applesauce, 2 chicken nuggets (of mommies), a few french fries, 4 cookies, and 3 ounces of apple juice to wash it down! 

 

Gotta love those steroids!!!

 

Her LFTs went back up today, so a liver biopsy was done at 4 pm.  This was to confirm rejection.  An hour prior to the biopsy she had a new PICC line placed and her femoral line removed.  Her PICC line, it should be said, was done WITHOUT sedation, just a local to numb the site.  Her nurses and the docs said that they've never seen a kid like her.  She didn't cry!  Oh my sweet Natalie, how strong you are.  Once she recovered from these procedures she was back to her normal self.

 

About the rejection: They went ahead and increased her steroids and they tell us that this should get the rejection under control.  She was given a dose of steroids prior to having the vent pulled and this helped, but she'll need a few more days.

 

Since we're on the floor and some have wondered, Natalie is free to have HEALTHY visitors.

Right now Natalie is running a fever of 102.  But her LFTs continue to improve.  She is also starting to get puffy as a side affect of the steroids.

 

For breakfast she ate 1/2 of a breakfast sausage - we're taking baby steps on the food thing.

 

Today's plan of action looks like this:

-Do cultures of blood to look for a bacterial infection (she's been on anti-viral meds up to now)

-Pull her subclavian line since it's been in for 21 days

-SEND US TO 6 WEST!!!

 

That'ss right, we're getting out of the ICU!!! WOOHOO!

See below for the room #.

Our big girl is having a super day!

 

This morning they decided to repeat the ultrasound from yesterday.  Something looked funny and after a second look, it was determined that all was fine. 

 

Her liver numbers went down.  Most likely this is explained by her having a mild case of rejection followed with the steroids the gave her prior to pulling the vent.  It is believed that the steriods helped to get the rejection under control.  At least that is the theory for now.

 

We'll continue to monitor her LFTs.

 

She just drank 8oz of apple juice and happily played with her new Fisher Price Castle this morning!!! She's napping now.

Grrr...As with all things, what goes up must come down and such is the roller coaster of our lives.

 

The doctors are still planning on pulling the vent today.  So that's a good thing.  Natalie's LFTs (Liver Function Tests) rose over the weekend - that's not a good thing.  She has an ultrasound scheduled for later today.  The doctors are thinking that this could be a mild case of rejection.

 

The "R" word.  No parent of a transplant kid wants to hear it.  But they have told us that it can be easily controlled with a few days of steroids.

 

After the ultrasound, we'll know more.  They may do a biopsy tomorrow.

Oh what a wonderful day!!!

 

Dr. Superina (her surgeon that I swear walks on water) came by today on the morning rounds.  They have decided to agressively wean Miss Natalie OFF of the vent.  They have slowly begun the process today and plan on pulling it out tomorrow.  (We hope she agrees with this.) 

 

Yesterday they started feeding her again, but just with pedialight.  Dr. Superina said that he thinks she can handle regular food.  So they have started giving her Isomil though her NG tube.  But again, very slowly, only 5 ml an hour, then moving up 5 ml every 3 hours if she tolerates it well.

 

She SAT UP TODAY!!! Daddy and I helped her.  We placed blankets next to her - to help prop her up - she's so weak.  But she had a wonderful time playing with her see-n-say and sitting there for a little while!!!

 

Thanks all for your words of encouragement.  We're praying for more good days to come!

Natalie's liver numbers continue to improve, slowly.  She is still on the vent. 

 

Every morning she has an X-Ray to look at her lungs.  Today's X-ray looked "wet."

 

The theory is that after closing her up, more pressure is being put on her lungs and she's not able to take deep breaths (this is not uncommon).  So they are giving her a little lasix (diuretic) to help get rid of the excess fluid. 

 

Also, this morning they stopped her feeds.  She hadn't had a poopy diaper in 2 days.  And her tummy was getting bigger as things "backed up."

 

An hour after they took her food away she gave her nurse a poopy diaper - that'll show them.

 

At this point we're not going forward, but we're not moving back either.  It's frustrating.

Natalie had another good night last night.  She got a new PICC line in her femoral artery yesterday.  They then removed the PICC line in her arm and the Artery line in her hand.  So she's left with a subclavian line (in her chest) and a femoral line.  

 

The surgeons were busy yesterday, they finished up with the second transplant around 2am today.  It looks like Natalie's surgery to close her will be around 1pm today.

 

Prayers are appreciated.

Today, 2 kids here at the hospital received livers!!!

 

But that means that Natalie's surgery to close her up scheduled for today was bumped to tomorrow. 

 

Currently she is at IR (interventional radiology) to get a new PICC line put in.  Her direct line (at her neck) started coming out and the site appears to be infected.

 

However, she is doing GREAT!!! Her liver numbers look AWESOME!!! She loves playing with the "My little pony's" that her mom got her (in Happy Meals from McD's). 

 

It is so cute.  She is wearing immobilizers on her arms, so her arms are stuck in a straight position.  So she is just passing her ponyies back and forth between her hands.  Poor kid.

 

I'm (Becca) doing quite well.  My incision feels good and is healing up fast.