Houston, Hearts and Hair Cuts

1. Houston
We made our trip out to Houston this week for Liver Clinic. Dr. F and Sarah were excited to see us in the outpatient setting, as we were to see them as well. I half joked, actually was super serious, that regardless of what the labs said, we were not staying...just here to say "hi" quickly followed by "BYE!" Praise the Lord, we were able to laugh that off because Bubby's labs were GREAT! Well, his bili was 0.0, which is super fantastico! Everything else was hovering around where it was the previous week, but a 0.0 bili?! Amazeballs. Yeah, you read that right. Amazeballs. So, the final opinion is this: SOMETHING, SOME THING (William Shatner-like) knocked out a huge percentage of his bile ducts last fall. And whatever that SOME THING was, is now under control and/or gone. Virus? Weird additive in his meds? Other infection? Alien life? We don't know. While I would love to know what the cause of this was, could it have been avoided, can it be avoided in the future; I am just so thankful he seems to be recovering and doing so much better. And, if I've failed to mention it recently, we do have the best liver doc and transplant nurse and team in the world. We aren't just another file, or another patient and their crazy parents. They do truly care. We are so blessed in many ways. Oh, and perhaps second best news, we are going to start weaning the steroids and possibly get rid of that second immunosuppressant!! Hooray!!

My Chuy's Date

NON-jaundiced Bubby.

2. Hearts
Yesterday was Valentine's Day. Emmy was way excited. She was so precious..."Valentine's Day is about LOVING each other!!!" They had a little party at school, in which her Secret Admirer, DaddyDaddy, had a special balloon bouquet delivered. The teachers said she was so excited to get a special delivery and made sure that her classmates knew that those were HER balloons from HER Daddy.






My precious Pumpkin.
Love her so much.











3. Hair Cut
Both kids were in desperate need of hair cuts. Emmy really only needed her bangs trimmed. Heck, I can do that. *Snip, snip* Saved $15. Weston needed a full blown cut, but I was possessed by the idiotic notion that I could do it like Emmy's. What resulted, I can only describe as if Mo (Three Stooges) and Lloyd Christmas (Dumb and Dumber) had a baby...

I messed up bad. REAL BAD. So bad, that when I picked him up early to get it fixed, they brought him out and at first I was like, this bowl-cut, mushroom headed child isn't mine. Oh wait, he sure is. The hair stylist was like WHAT DID YOU DO TO THIS CHILD?! So he got one too many valentines from girls in his class. He loves only the Mommy, ok? Don't judge me. You gotta do what you gotta do. ;-p
Happy to report that it is fixed, and he is a handsome devil again.

The Deal

We've just been going along with minor adjustments to W's ProGraf for the last month.
Weekly labs.
No real changes to the values.
Very jaundiced little boy.
All too frequent pale/less than acceptable poop.

Then I was a bit blindsided Monday afternoon.

He has to have labs drawn Friday (tomorrow) and if there is not significant improvement, they want us to come in next week for a new medicine infusion. 

Rituximab

Chemo.

I want to vomit. Cry. Smash things. Scream WHY?!

I had a hard time with the addition of Imuran.
Every time we start a new immunosuppresant I freak and worry myself sick about cancer.
Well, now he could get chemo. 

I am terrified and angry and so, so sad.

As I am understanding, he is still trying to reject his liver. So, with this Rituximab it will basically target all his B cells (part of his immune system)...pretty much wipe them out and "reboot" the immune system.

Lots of prayers for a miraculous turn around.
We should know by Monday.

His favorite bath time activity.

Waiting For White Coats

It's almost 5pm and we're still here...

This is how my nightmare starts...I go in for something simple, say "How to Rid Oneself of OCD Tendencies." They find out I'm bat sh*t crazy, commit me. The next thing I know, I'm having a lobotomy and drinking mashed potatoes through a straw. 

Ok. That was extreme.
But, its almost 5pm AND WE'RE STILL HERE!?

WHY?!

They came by earlier this morning to say that they are waiting for the biopsy results, but in the meantime, lets do an ultrasound.

Sure, why not?

And that, friends, is where we are.

It's almost 5pm and we're still here.

Just Plain Over It

I don't know if it is the lack of activity on the weekends that just make them seem to last forever.
GD came in to visit this weekend.
He's been taking Bubby on his walks, so I can nap during he day.

Poor Bubby.

He is SO SWOLLEN.
His clothes don't fit.
Shoes don't fit.
Hands are puffy.
Boy parts are swollen, too.
:-(

Can you believe this is the same kid??

His belly is so big and tight; he's taking shallower breaths and just can't get comfortable.
Think 9 months pregnant.
I am guessing this is an issue associated with the steroids...I also feel like I'm the only one that this is concerning.

He gets tired walking around and wants me to carry him on the way back.
Problem is, he's getting so heavy, I can't really carry him.
He's up over 5 lbs since admission.
Poor little guy can't sit up without a struggle and took 30 minutes to get comfortable in bed tonight.

That diaper is reaching its limits.

**WARNING**
I'm hosting a pity party for myself, please stop reading.
It's more for me to vent and get it out.

Sick of Tired of:

• Midnight and 4am vitals, followed by midnight and 4am snack fest
• Neighbors
• Being at the mercy of others for clean sheets, towels and snacks and diapering supplies for W
• The massive temperature swing between the arctic setting of 70 and the Sahara setting of 75.
• Not having my own broom/mop/vacuum to clean this floor
• People just barging in without knocking
• Volunteers
• Cafeteria and Fast Food
• Not having the appropriate sized diapers for my child
• The same 4 outfits 
• Having to risk getting cut to do laundry
• Cars and Toy Story 3; Bubble Guppies
• Having to use the main garbage can as a diaper pail

Missing my little girl and the DaddyDaddy lots today.

Is That A Light I See At The End Of This Dark Tunnel??

I think it is!

Yesterday they drew a special blood test to check for some enzyme that will tell them how to dose the Imuran to avoid the bad side effects.
Can't argue with the cautious approach.
The bummer is that its a "send out" lab...like California send out.
2-3 business days send out.
:-/

You're killing me smalls.
Monday? Tuesday?

In the mean time, he is finally off IV steroids and on oral steroids.
Can't wait till we are totally off steroids.
Check out little man's poor belly.

Poor baby.
The shirts that fit when he came in are too small and don't fit over his belly anymore.
He's gained over 2 lbs since we got here.
It is so tight and his little belly button is poking out.
Most is fluid; some might be chocolate milk.

My feeble attempt at reminding him how much he liked vegetables before all this mess.

We haven't slept well the last two nights.
Midnight and 4am vital sign checks are getting oooooooooold.
Not to mention, our new noisy neighbors that moved in last night.
Geez almighty.
As with any hospital stay, there is no rest for the weary. Someone is always waiting to mess with you; usually on the heels of the last person that was messing with you.
Just a bit of fair warning...the next person that says "I'm sorry for waking you up," gets a punch in the face.

Bubby concurs.

In closing, I've got to share something that our attending doctor this week told me.
Got to say, I really like this guy.

He's very into visuals and teaching; and actively involves me in their rounding.
Like, pulling up the labs and going over trends.
Maybe he realizes that I am a control freak and am impatient and demanding?
And it is better to just indulge that kind of crazy, freaky parent.
 

Today, as we were going over his labs, I noted that all his enzymes went up slightly.

He noticed I was freaking on the inside.
 

"You know, think of this as an airplane ride. The take-off is all tense and focused for everyone involved. Take-off is like the transplant and immediately afterward. Then, you get up in the air and you're cruising along. Most of the time, its a nice calm ride. But, every once and a while, you fly through a cloud and the plane shakes. The pilot knows that you're flying through a cloud and its a little shaky. The passenger thinks "OH MY GOD! WE'RE CRASHING!!
We, the doctors are like the pilots. We know he's flying through a storm. But, we know we're not crashing."

Well played, sir.

Well played.

I like that.
1,000 bonus points to you, Doc.

Paging Dr. House

Day 11 of our captivity...

Got to say, this was not a happy Mommy day.
Lots of "face-palm" and death stares being passed around.

My Mega-Issues of the Day:

1. The GI team did not round on us till after 4pm.
Seriously??
Listen yo, I know we are not the only patients on your list AAAAAAAND I have insider info on how this whole ridiculous dance we call healthcare goes. But, not giving any new information to a patient/parent till late afternoon following a useless weekend?!
Crazy, b***h mama was mounting her broom.
**insert death stare**

2. So, his liver is working just fine (AST/ALT are improving everyday...Praise God!) but, the bile ducts are of concern (GGT).
We're not quite sure...yada yada yada...Vanishing Bile Duct Syndrome (WHAT?!)...possibly related to the amoxicillin and augmentin he took.

**face-palm**

We're back to the antibiotic theory.
(BTW, WHY are these antibiotics on the "ok" list for liver patients? Well, you see, this whole amoxicillin destroying your bile ducts very rarely happens and no one is quite sure why and how and when. Side note, Dear Bubby...Mommy and Daddy are thrilled you want to be an individual and stand out. God didn't bless you for you to blend in and be a follower...just, lets stay away from the bizarre medical anomalies. Huh? Shesh.)

The plan as of 4:30 this afternoon...continue to slowly lower the steroids (even though this is day 5 of the original prescribed course -_- ) and try a new medication, ursidiol, to see if it will help lower the GGT. Ursidiol is actually a med that he was on prior to transplant; it helps stimulate bile flow. 

Gaggle of Doctors:By Wednesday we'll know if we need to do another biopsy.
WHOA! Another biopsy??
GoD:Yes, Crazy, Agitated Mother, another biopsy. If this doesn't work we need another biopsy to figure out what is going on.

**face-palm**

So, you don't see us going home any time this week.

GoD:MUWAHAHAHA!

(Let me just clarify. My beef is not really with the doctors. I know that we are in good hands and they are doing everything in the best interest of Weston. They get the brunt of the frustrations because they are the bearers of "no news". This is day 11 of our incarceration and while the evidence of whatever is happening is dissipating, we still are no where closer to an answer than day 1. FRUSTRATING)

3. Day Nurse
Day Nurse, you and I are going to fight.
Or maybe I'm just going to assume care of my son...

Er'body else uses his PICC for his glucose checks. You, insist on sticking him.
THEN you double stick him with his insulin syringe...twice today!!
And the second time, the insulin didn't even make it in!!
Not to mention making my toddler stare at his food tray while we hunt you down for ten minutes to check his blood sugar before he can eat.
o_o

**death stare**

4. The New Bubby Diet
W is sustaining life on a diet of Pirate Booty, peaches and milk.
Yep.

Where is my kid that ate everything??
Vegetables?
Protein??

Pirate Booty, peaches and milk.

**face-palm**

5. Cafeteria People
WHAT IS YOUR OBSESSION WITH THROWING AWAY FOOD?! 

9:36
We missed breakfast service because Day Nurse slowed us down.
Breakfast service ends at 9:30.

Well, not a huge deal because I don't want you to make anything for me. Just want a cup of grits you got there in that pot.

NO! Breakfast is over! 9:30! It's after 9:30!

Ok. Can I ladle out my own grits? No skin off your back, right?
NO! It's 9:36!! Breakfast is over!
Well, what the hell are you going to do with the left over food??
BREAKFAST IS OVER.

**death stare**

So, when I worked in the schools, a kid could get in line and get a hot meal tray. When they reached the end of the line and it was discovered that they didn't have any money on their lunch account, they promptly took the tray away, gave the kid a cheese sandwich and then 

THREW THE HOT MEAL AWAY.
Seriously?!

Seriously??

I'm going to bed to sleep off some of this crabbiness.

Thank you for the continued support and prayers for my little man. <3>

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!!

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?!?