Beauty and the Beast

Well, considering I forgot my make-up bag and have been sporting a uni-brow, dark circles and a chin full of breakouts; perhaps I should entitle this post Beast and Super Beast.

After a couple doses of steroids, there was no change in his liver enzymes. In fact, they went up a tiny bit.

:-/
But, the doctors weren't too discouraged by that. They want to see what it is tomorrow and Saturday after a few days of steroid treatment.

I wish I could paint a clearer picture of what is going on, but the frustrating and scary thing is, no one is really sure.
They are not ready to definitively say, this is "x" caused by "y" and we will do "z".
I'm kind of getting the feeling that Weston's presentation is pretty unique.

Ugh.

We are praying that the steroids work, because there are some pretty scary possibilities beyond that.
They drew tons of labs this afternoon to rule out some auto-immune factors.

PICC line was placed this morning. YAY!
Draw all the blood you want!
;-p

So, why the Beast?
" 'roid rage" is real.
I got to witness it first hand.

I think it is totally unfair that the steroids haven't improved his labs, but have turned him into a moody, aggressive monster.

He had an hour and a half tantrum.

I'm not exaggerating.

90 minutes of screaming and tears.

Oh my GOD!
I'll take a toddler tranquilizer and a Xanax, or valium...hell, I'll take both. For me, course.

So, that is where we are.
Waiting.

No pictures. Today was ugly. You don't want none of that.

Not What We Wanted To Hear

When someone is talking to you, do you ever just hear noise??
So frustrating.

Especially when it is about something important.
I'm going to have to go back over this with the doctor tomorrow, but this is what I heard amongst the crashing cymbals and static.

Chronic rejection is a state in which the bile ducts are being destroyed or are absent. 

Remember what BA is? 

Think I was able to really comprehend anything after "destruction/absence of bile ducts??".

I'm not sure what causes the "chronic" nature of it. He'll have to re-explain tomorrow. And, I'm not for certain it is "chronic".

 The plan is as follows:
5 days pulse of high dose steroids.
Re-evaluate.

If the steroids don't do the trick, then they may consider another immunosuppressant that acts on a different aspect of the immune system.
Remember T-cells, B cells, and all that jazz?
No? Me either. Guess I'm going to have to go back and review that more in depth.

The attending doctor assures me that if the time came when he was concerned that W's liver was not functioning properly or would not be able to sustain him, he would be up front and honest with me.
And, he says that it is not time to think anything like that.

Reassuring, but I can't help but obsess and fear it.

He started his first doses of steroids this afternoon. By the grace of God, his IV still works.
We are scheduled to get a PICC line tomorrow, PRAISE JESUS.
He will be on steroids every six hours around the clock for 5 days.
And will have a whole slew of labs every morning. So, this PICC is a true blessing.

Picture time:

I guess he feels like he sits too much. To eat pizza, we now stand.

Never thought I'd think that "food court" pizza was actually good. But, comparatively speaking...

This looks like a good place to sit down.
See what I mean about germs??
He threw a mega tantrum because he wanted me to unhand him so he could sit. In the middle of the lobby.
I guess I am one of "those mothers" that lets their kids touch the floors of a public place...

Eating gelato
(I told you the Women's Pavilion was super nice)

Eating gelato like a boss

We ventured to the playroom today and he stole this taco from the play kitchen set up.
Seriously would not but the taco down.
Walked the halls with the taco.
Watching a movie with the taco.
Should I be concerned or do you think he wants some Mexican food up in here?

 

He likes to pretend he's King Kong of the Medical District

Back to touching the germ ridden floor.
After sitting, he decided he wanted to experiment with yoga.
Trust me, we washed hands as soon as possible...still think he probably put something in his mouth.
o-O

I know you all are praying hard for him, and we appreciate it.
Please keep up the good work.
:-)

PS: I miss my baby girl. She sounds SO LITTLE when I talk to her on the phone. Mommy loves you so much, Emmy!!

Aaaand We're Back at Step 1

The biopsy results finally came in this evening. We had a visit from our regular liver doc and from the attending on rotation. Here's the short story: liver tissue shows inflammation, but not in the typical amount or pattern of "classic" rejection. ALSO, there are a large amount of allergy type cells present and scarce bile ducts in each samples. (Usually they will see 3-5 in a typical biopsy). Side note, did you know that Amoxicillin can destroy your bile ducts?? YAY!
Guess what was prescribed for his strep throat?
I'm wondering why Amoxicillin isn't on the list of "no-no!!" meds for a liver pt.
Anyway. So, there are two competing thoughts. One doc feels that he is still in an episode of rejection, it is just not presenting as a typical case. The other feels that he is having a reaction to the antibiotic.
It all hinges on the labs that were drawn at Cook's on the 2nd.
Aaaaaand both diagnoses have totally different treatments.
If it is rejection, we start a week's worth of IV steroids.
If it is a drug reaction, well, we wait and let the inflammation resolve and we can go home!
Aye ye ye!

The major point to take away is that Weston is not going to lose his liver.
I haven't done a good job at pointing out that rejection is, in most cases, treatable AND somewhat expected.
However, if we can get away without suppressing his immune system with massive steroids, I'm all for it.
Oh, and Cook's did nothing wrong in prescribing him the Amoxicillin. Just wanted to point that out. It is actually one of the drugs that the liver handbook recommends. I KNOW! I'm going to have to sort that out. PS: We were very impressed with the ER at Cook's. They are good people :-)

So, yeah.
I guess we will wait and see what those labs were.

Meanwhile, I am thinking that all pediatric hospitals should have a psychiatric hospital attached to it for the parents.
Baby Bubby in the hospital slept a lot or was content with just being held.
Toddler Bubby in the hospital is going stir crazy.
AND it is IMPOSSIBLE trying to keep him from contaminating himself. EVERYTHING ends up on the floor; the hands are everywhere; fingers are rubbing eyes or in the mouth.
o-O
Today, we rode the elevator about 20 times. AND someone managed to push the emergency call button before I could restrain him.
Thankfully, we were exiting the elevator before they picked up.
I don't think my apology to the remaining passengers did much to assuage their irritation.
We made multiple trips to the laundry room, trying to do ONE load.
Laundry is a very cut-throat event, here.
Two washing machines for the whole place.
AND multiple trips around, here and there.
We went out to the garden for a little humidity fresh air and sunshine.

Bubby loves the fountains

Checking out pigeons

 So, that was our day.
We appreciate all the thoughts and prayers.
We are so humbled and blessed by all the people from all over that have put Weston and our family in the forefront of their minds this week.
Thank you :-)

Bibop, Bibopsy

Ok, I might be going to hell for making fun of biopsies and dermoid cysts.
But, I can't hear the word "biopsy" without thinking of this.

 

 

 

 

 

 

Kicking back, waiting for my biopsy.
Side Note: Two-year old W handled the NPO one zillion times better than baby W.

Recovering in PACU.
He woke up so well!!
Yay for awesome anesthesiologist!

Such a sweet boy

That's it! A teeny tiny little spot.

Breaking free after 4 hours of bed-rest.

Another milk carton pic.
It's just so cute!!

 The whole procedure took about an hour and fifteen minutes.
He did great and never cried or fussed.

:-)

Such a brave boy.
We should have results by tomorrow afternoon.

We had another small pseudo-victory.
They dc'd the vancomycin.
The bane of my existence.

Bubby has been through three IVs since Friday evening.
Hmmm...wonder why?
Perhaps because vanc is supposed to be run through a central line??
Do you remember my last performance dealing with vanc and PICC lines?

So, even though the vanc has been dc'd, he still needs an IV for the other antibiotic and I'm sure the heavy duty course of steroids to come. Oh, and the daily blood work.
This is a great example of doctor vs nurse.
Almost every nurse we've had, PLUS the two special IV start nurses have agreed that W is a great candidate for a PICC line.
Doctor says no due to risks associated with a PICC.

**face palm**
Of course the PICC has risks...well, so did the liver biopsy, but we went ahead with that.
Doctor that says "no" doesn't have to restart the IVs or draw labs every morning.
I mean, really. Could you stick the Bubby?!?

Intruder Alert

So, when your sick, your immune system tries to kill all things foreign inside the body to fight the infection. Unfortunately, it doesn't understand that Bubby's new liver is actually a good thing. All it knows is that it doesn't match all that is Weston.
Hence, infection can bring about rejection.
Remember that horrible case of strep throat a week ago??

His liver enzymes have improved slightly, but not significantly enough to rule out rejection.
He is scheduled for a liver biopsy Monday.
He will be asleep and I have been assured that he probably won't even need Tylenol for pain afterwards.
The results of the biopsy will give us the definitive answer of whether it is just inflammation from being sick or rejection...or both. 

Either way, we won't get those results until late Tuesday.

IF it is just inflammation, we can go home pretty quickly thereafter. If it is rejection, then we're looking at a huge dose of IV steroids and about a week more inpatient stay.

I can't lie, I feel like its been a big case of hurry up and wait.
It's only been two days, and the thought of another week seems unfathomable. 

We have been very blessed with great nurses so far and are lucky enough to be in the nice corner suite room.

Bubby likes this dining in bed with the tv on

Precious Boy

Chillin', watching Blues Clues

After his two and a half hour antibiotic session, we got Mr. Man dressed and took a trip over to the good cafeteria in the new TX Children's Women's Pavilion. Tres chic. He was so happy to be out of his room and wandering.

Checking out the fish. A favorite past-time here at the hospital.

Labors of a Long Weekend

You can't convince me otherwise; if it is a long weekend, holiday or God forbid both, something awful is going to happen to us. 

But, lets start with the glass half-full...

Precious baby girl has been so sweet lately. The whining and attitude has been less prominent this past week. Why? I don't know. Don't ask! Don't care!

Snuggling with DaddyDaddy after bath

Bubby has convinced me that he has a very verbose internal monologue, but doesn't really have much to say to the rest of us. Everyday he pops out another random word or phrase and as soon as it registers that he said it, it's gone. 

Can't really fault him. 

Introversion is a lost virtue.

Introvert or not, he's still a ham.

She requested her picture to be taken.
Not sure why...or where her pants are.
The face is hilarious.

Saturday night, they are running around like crazy people.

Chasing each other around the coffee table, screeching and goofing around.

Then came the infamous midnight fever.

Poor Weston.

By noon Sunday, he was still running fever with Tylenol on board, lethargic and just really acting odd.

I took him to the little Urgent Care place in the next town over and they took one look at him, in combination with his history, and called Cook's Childrens in Ft. Worth and had the ambulance transport us from the Urgent Care to the ER.

Hours and hours, lab work, X-Rays and a CT of the head and neck later; he has an aggressive case of strep throat.

IV fluid and IV antibiotics has made this little man feel brand new.

We got home around 2:30 this morning and he woke up telling me he was hungry!

I'd be willing to say he was up to 90% of his normal self today.

Cutie Pie Emily stayed with Aunt Susan and Megan and they had a fun girls' night.

Too much fun, evidently!!

In effort to salvage the last few moments of the holiday, we took the kids to ride go-carts.

Emily LOVED it. She rode with both her daddy and myself, and evidently, I was not driving fast enough.

Bubby was not impressed. 

Not sure if that was the 10% talking or if he just isn't all that into that.

We topped it all off with some delicious hot dogs and brats on the grill

Check out those Octopus Hot Dogs!

Quote of the day:

Emily: "Yuck! I don't like french fries!"

What 4 year old doesn't like fries?! We must be doing something really right or realllllllly wrong.

Rawr!!

Dinosaur shirt -check!

Dinosaur shoes -check!

Perfected 'rawr' -check plus!

It was such a nice morning...temp in the 70s, blue sky.

We decided it was a great time for an impromptu day trip to Dinosaur Valley State Park.

RAWR!

Bubby was going to freak!

Bubby rawring with his fellow dinosaurs.

Dinosaur World

It was a little disappointing.
The tracks were covered up with mud, since it rained last night.

We are going to go back again in the fall when it gets a little cooler.

But, the kids enjoyed seeing the models and playing in the park.

It was quite an enjoyable Sunday 

:-)