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>

Ghost Town

It never ceases to amaze me that such a busy place become so deserted over the weekend.
Except for the ER over-flow waiting out in the main lobby.
Labs:
His AST and ALT have dropped, but the GGT hasn't budged since the initial drop.
So, now we have to think about chronic rejection again.

:-/

The weekend doctor didn't have much info, but he did say that his liver is functioning well; we just may need to look at some different types of medication.
Overall, I guess that's a "yay!"

Medications:
They have been decreasing the steroid dose every 24 hours. And with each reduction, the beast fades further into the shadows.
Our sweet, snuggly bug is popping up here and there:

Watching the Cowboys with DaddyDaddy

All cuddled, super cute like

One of the side effects of steroids is high blood sugar.
He's had his blood sugar checked for the past few days, but today was the first day for insulin shots!
Poor bubby!
The good news is, that as the steroids go down, his blood sugar is normalizing.

They continue to mess with his Prograf. I don't know what they're doing. I'm sure they'll tell me how much they need him on when we finally get discharged.

Recreation:
We went for our THIRD ultrasound this afternoon.
What are they looking for??
An alien???
Bubby hates the ultrasound people.

When we are not getting belly scans, we like to take walks with various items. Usually, he likes to parade around the hallways with his football balloon.
This morning, his items of choice were my sunglasses and his daily menu.
He loves to riding the escalators up and down in the Women's Pavilion.

And of course, thank God for iTunes.

Kicked back watching Cars

Toy Story 3 for like the bazillionth time, Mom

GD is hanging out with my Emmy!
I got this photo this afternoon:

She's precious and one of a kind!
I miss you, my love!!!

It's A Bird... It's A Plane....

(Update From The Daddy):
From what I have gathered, things are getting better!!! YAY!!!  Liver is responding to the steroids just the way they wanted!  OUTSTANDING... Thank you all for your thoughts and prayers, and mojo, and juju, and seances, and any ocd habits you may have superstitiously taken up in honor of my little man!

Ok.... On to this big huba-baloo that we have been hearing about all week.  I gotta tell ya... this week, I had been back in Stephenville... Ashley has been here in Houston. I have felt quite a bit guilty... Sure, Ive been working... but.... I've been able to have a shower in my own home and a big ol bed all to myself.  I felt guilty pretty early on knowing that Ashley was here in the hospital room, asking questions and trying to pry answers out of doctors and nurses, all the while, trying to keep a two year old "quasi-content" and happy in a hospital setting.  Needless to say, I did not envy her. And I felt very guilty... Reading the blogs, somewhat horrified, not smirking at all at ANY calamities (dear).... just wishing I could do something to help.

Now, please do not confuse my WILLINGNESS to help with an EAGERNESS to travel 300 miles this afternoon into the belly of the beast!!! I was petrified... But, I know my wife had been at this for a full 4 days without my assistance, and deserved a break.  So on the way to the hospital, I called and asked her if she would like to get a hotel for the weekend, and I will spend the weekend nights with the Hulk....errr.... Weston..... and she would be allowed (at least) two hot quality showers, and two nights in a plush King Sized bed, which will allow her stress and emotional frailty to dissipate. It is the least I could do.

Again... Petrified, I came up into the room.  Was greeted warmly by a wife thankful to see a familiar face and a sleeping... (YES SOUNDLY SLEEPING baby).... He did not gnaw my face off.... he did not display the shrill screech of a weedeater with the throttle stuck wide-open.... He was sleeping. 

So what's so bad about this?? He woke up.... we played a while.... then we had some dinner... took a bath, and then promptly back to sleep once again.  Life is good on floor 12!  Don't believe me? Check it out below!! 

Enjoy your rest, Mama..... Daddy's got THIS!!! ;-)

Pirate Booty and Lion King.... Just what the Dr. Ordered

A little post bath snuggles... This seems like it'll do the trick.

Uh oh... Maybe this is where the beast will show his teeth... Medication time.

Nope... The savage beast has been soothed!

Take us out Montell Jordan

Good Bad News

I never thought I'd be so happy to hear the word "rejection". This morning, the doctor told me that Bubby's GGT dropped 100 points and his bili went down 70%. His AST and ALT haven't changed much, but they just may need time. He said GGT and bili are what he's more concerned with. He also said that if W was his, he'd be very happy with this news. :-D

They kept the steroids at the same dose today to see if they could get the AST/ALT down. They also re-did his ultrasound this afternoon to recheck all the vessels. Evidently, a clot can cause vanishing bile ducts. I guess we will have those results tomorrow. I haven't heard anything about the one a week ago, so I'm going out on a limb and assuming that there's nothing to worry about.

Bubby is still a very unhappy young man. I'm not sure if he doesn't feel well , if he just tired of being there or the steroids...maybe all of the above. He doesn't know what he wants...he's just angry. Poor baby. But, it was a bazillion times more tolerable knowing that the steroids are helping!!

I am writing this post from the comfy privacy of the hotel across from the hospital. The DaddyDaddy came in this evening and relieved me of my cantankerous patient. He was a little more tame by the time I left, after accepting our offering of Pirate Booty and Cars.

Check it out...

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.