Liveration, Part 2

We are home!!

We were discharged from the hospital late Tuesday afternoon and spent the night locally because we had to have labs drawn in the morning. 

My uncle and aunt put us up and fed us REAL food aaaaaaand perhaps the best part, they live maybe 5 minutes from the TCH West Campus, which we were able to go to instead of traveling all the way down to downtown Houston.

I just heard the news.
I'm too cool for this place.

Tuesday, before we left, the wives of the Houston Texans visited and brought some goodies.
They were oohing and awwing over my Bubby, and he let out the biggest burp.

lol

Good. He just loves the Mommy.
And the Cowboys.

On his way out.

Houston traffic has never been so beautiful

I'm free!!

We got home to Stephenville Wednesday evening.
I was so excited to see Emily!!

She was a bit more excited to see Wes, but I'm ok with that.
I was pretty excited to shower in my own bathroom and sleep in my own bed.

Weston was so excited when he realized we were home.

Clapping. Cheering. Big smiles.

My big guy

These are my toys!!
I remember them!!

So, here's the plan:
Labs AGAIN tomorrow and then weekly thereafter.
:-(
We went from just one medication twice a day, to five all through the day.
It is going to take some time for the liver numbers to normalize (they are no where near normal, yet) and they are going to watch him like a hawk (hence the weekly labs).

He should be able to go back to school on Monday, though.
I think it's good for him to get out and get back into a routine.
We've got to go shopping for Bubby. Thanks to the steroids, all the new clothes he had for fall don't fit anymore.

We are all so happy to be back together and start getting back to the new normal.

Thank you again, for all your prayers and support.

:-)

Soon

We are getting so close to being able to go home!
Today, we got things lined up to get his new medications delivered to home; started Imuran; and had another dose of IV Lasix and pulled off a lot more fluid.

A lot of people have been asking for updates and a prognosis regarding the episode of rejection and the bile duct business.
While we are pretty certain the root cause of all this mess has been uncovered, the situation is delicate.
At this time, all I can say is that there was an issue with the medication at home.
The best thing to come out of this, is that this bizarre "he's been in rejection all year and hasn't shown it"; the amoxil ate his bile ducts theory; and he's a fascinating alien; have all been de-bunked.
He is a normal post-transplant baby, and under normal, compliant circumstances, will do just fine.
Although his GGT is starting to improve with just the ProGraf and Prednisone (oral steroid), they still want to start a low dose of Imuran to help punt it back where it should be.
Perhaps, once all his enzymes return to normal and he has a good result from his follow up biopsy, we can see about getting rid of that second immunosuppressant.

Over the last two days, they've been able to pull off about 800mL of fluid with the Lasix. YAY!
While his face and tummy are still very puffy, I can totally tell a major difference in his feet and boy parts. I bet that feels a heck of a lot better!
He feels better, too.
More running and playing.

More laughing.
:-)

I thought I'd share some of that precious laughter with you.
The Lorax is Bubby's new favorite movie.
He thinks the Lorax and the little animals are hilarious.
It's totally presh, I tell you!!

Sorry for the low quality. :-/

Counting Blessings

Just wanted to say "thank you" to everyone out there for your support.
I know I say it all the time, but I mean it every time.

It is not easy for me to ask for help, or take it for that matter.
I am so very blessed to have you all in my life.

As promised, I just needed to flush my system of the frustration and negativity.
Today was as fabu as you can get...that is, save for walking papers.

Tonight, I'm going to list the blessings we received today:

1. Dad was here and brought us breakfast

2. Docs rounded on Bubby first thing and wanted to investigate his swelling
3. Bubby tolerated his 4th abdominal ultrasound along with a scan of his unmentionables super well

4. We had one of my favorite day nurses on this morning

5. Blood sugars were all under 140 today, holla!
6. Bub chose white milk over chocolate milk in the cafeteria

7. We were able to go on our longer walks without him needing to be carried

8. Lasix!! Followed by two big peepee diapers!!
9. Weston smiles

10. Weston laughs

11. Playing on our walks

12. Running on our walks

13. FaceTime with my baby girl and DaddyDaddy <3 br="br">

14. Visit from my uncle

15. Care package of awesome dinners from my aunt

16. Awesome night nurse for 3rd night in a row

17. Bubby reaching for my hand
18. TOTALLY available laundry room, laundry done in one shot!
19. Improving GGT

20. "I-wuv-u" from my little man <3 p="p">

And these are just the ones the come easily to mind, without much thought.
I am more blessed than burdened on any given day.

Mr. Weston is all clean and tucked away in his bed, playing and growling with one of his dinosaurs, watching Tangled.
I am so relieved that he is SO MUCH more comfortable this evening.

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.

Anomaly

a·nom·a·ly  (-nm-l)n. pl. a·nom·a·lies

1. Deviation or departure from the normal or common order, form, or rule.

2. One that is peculiar, irregular, abnormal, or difficult to classify

3. Weston Wyatt Golden


After the re-review of his biopsy, the conclusion is Chronic Rejection.

 Probably. 

Most likely.

Surely?

I know what you are wondering...HOW can he be "chronically rejecting" when he's never rejected before?
Ah. That's the good part.
Evidently, he HAS been in rejection for quite some time, yet his liver panel never showed such evidence.
What?
Yep.
Is that possible?
Evidently it is now.
This doctor has only seen this sleeper chronic rejection in ONE other kid.

Of course there still is the off chance that he's in Acute rejection coupled with something weird and bizaaro, like the antibiotic thing.
Probably not, though, as he hasn't taken amoxil in over a week and his GGT continues to rise.

My diagram of what is wrong with Bubby.

What now?
Imuran.
Ugh.
Imuran is another immunosuppresant that works on another aspect of the immune system.
So, he's on Prograf and that is working at keeping most of his immune system from attacking the transplanted liver. But those bastard bile ducts have to so darn tempting.
The goal of the second immunosuppressant is to further "blind" his immune system so it can't see those bile ducts.
At least that's the way I understand it.
He did say that his liver tissue looked really good and had hardly any fibrosis or cirrhosis.
That is awesome news!
I have tried very hard to wheedle out of them a long term prognosis on this Chronic business.
To say they are not forthcoming, is an understatement.
What I gather is:
If they can get the disappearing bile duct act under control (with the added Imuran), he has a chance of letting them regenerate and he'll be just fine with the liver he has.

If they can't get it under control and they keep disappearing...we're in trouble.
What do you mean "trouble"?
Hey! Look at that bird!

Ok, maybe not that bad, but definitely not super clear.

Imuran starts tomorrow. Of course, they need to monitor him on that for a few days, to make sure he doesn't have a reaction (ie nuetropenia) and they get the dosing right.
MAYBE.

M.A.Y.B.E.

We can go home in a few days.

PS:

Victory is MINE!!
Even if it is at 0700 am SHARP!

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>