Weston 2.0 Update

TCH Day 16: Post-Transplant Day 3

I can't lie, I am disappointed today. Weston is STILL intubated and will likely stay intubated for the next couple of days.

Here's are the issues:

When the new liver was put into Weston, they had to sew the arteries and veins to establish blood flow from Weston to the new liver.

SO, in order to protect these anastomoses, the liver team likes to keep the patient "positive" for fluid (input vs output). Well, as we all know W was having issues with fluid overload in the first place. AND with all the extra fluid they have been keeping on him, his lungs are "wet".

It is a very bad idea to try to extubate "wet" lungs. He probably wouldn't be able to breathe adequately and would end up re-intubated.

Ok. Yet another issue...

Breathing through an ET tube is very much like breathing through a coffee straw. And, no doubt, super uncomfortable.

Wes hates his ET tube.

With a burning, unbridled passion.

So, they have to keep him sedated, otherwise he works himself up into such a tizzy that he is actually  lowers his heart rate and drop his oxygen concentration.

Funny enough, as I am having my little rant here, I just spoke with our transplant coordinator who gently reminded me that I am not his nurse, but his mother.

And it is far better for him to be on the vent than back on the list.

Rats! I hate being put in my place, LOL!

Bottom line, they are slowly starting some albumin and lasix today.

Now for something completely different...

I haven't spent this much time with my husband in the last 3 months.

AND I am thrilled to report that for the past 2 nights, I have had two nights of uninterrupted sleep. A first in 8 months.

We have been staying at a hotel in the Medical District that is ~1/2 mile from hotel door to hospital door. So we have been walking to and fro, a few times a day.

I have so enjoyed our walks.

It is the first consistent exercise I've been able to get since Weston was born.

I thought I'd share some highlights from our route.

The Medical District is truly amazing. So many hospitals and research facilities. Of course MD Anderson had many, many buildings here.

This is one of MD Anderson's buildings...Houston Main Building.

It is UBER creep-tastic. It is due for demolition, so it is vacant and a run down.

It gives me the heebie jeebies. Yeeesh!

There are random windows open all over and the windows open out, like a horizontal V than up and down.

It seriously looks like a mental institution....one that is haunted by the heinously mistreated patients that revolted and killed all the staff and ultimately themselves.

Unfortunately. it doesn't have such a colorful history...rather bland.

We are really impressed with the upkeep and how NICE this area is. Austin and Dallas' medical districts are not so fabu and safe.

This is part of the landscaping outside of the TCH and St. Luke's entrance.

The picture does not do it justice. It is so pretty and SMELLS so good.

The only not-so-good thing, are the nasty pigeons. They and their souvenirs are everywhere...

This particular one decided he wanted to cozy up next to us during lunch.

I hate birds. They are terrifying.

I did not reciprocate his need for affection.

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Weston 2.0 Update

TCH Day 15, Post-Transplant Day 2

If you are my Facebook friend, I am sorry that this is mostly a repeat of the mid-day update.

I ran into one of our 12th floor friends in the ICU waiting room this morning...her son received his transplant last night!! AND another B liver! 3 liver transplants since Thursday. Unbelievably amazing.

I am SO OVERJOYED for them!! 

Weston is still intubated and requring a lot of sedation. Versed is his drug of choice.

He received a blood transfusion this morning and followed it up with some Lasix to help pull some fluid off.

I was able to see his chest x-ray this morning. It has improved, still a little "wet". Hopefully, that Lasix will help him and we can move toward extubation tomorrow.

Speaking of his XR, I saw his little teeth on the film!! Super neat-o!

And how awesome is his kick-a** new liver?

Uber awesome!

His biliruben level is NORMAL.

His liver enzymes have HALVED from yesterday.

He is pink and rosy.

He is still running a fever and the liver team approved a one time order of Tylenol.

When we left this evening, his temp was under 100F.

Nothing has grown in the previous cultures, but they re-cultured everything just to double check. They also started a new heavy duty antibiotic, Vancomycin, to cover their bases while the cultures are pending.

Billy and I were talking, (face to face! :-) ) and even though W is having a little trouble coming off the vent, we have such a different attitude this time around than post-Kasai. That was the most difficult thing I have ever been through, seeing my infant son post-op, on a vent, and with drains/lines coming out of everywhere.

This time, he is still post-op on a major surgery, on a vent, with drains/lines everywhere. But, unlike last time, we have HOPE. Last time, we had a devestating diagnosis. This time, we have our son with his second chance at life.

Emily went home with her Nana this afternoon. I wish I had more time to spend with her and that she could have come up to the hospital to see Wes. She hasn't seen him in over 2.5 weeks. She asks about him everyday. Such a sweet, loving child. We want to give a special "thank you" to Uncle Johnny and AuntieM for keeping, feeding and loving Emily this weekend, and especially to Miss Allie and "Kimmery" for babysitting and slumber parties.

Tomorrow is a big day! All members of the liver team will be by to see Weston! I can't wait for them to see my BA-free baby!!

Our Miracle

On our 13th day at Texas Children's Hospital, our prayers were answered. There was a liver available for Weston. Oh my God, the bittersweet joy was overwhelming. If you pray for Weston, we are asking to include our donor, our Hero and his/her family. Without their sacrifice and ultimate generosity, our son's life would still be in danger.

Today is the first day in Weston's life that he is getting BETTER! He is still intubated and will more than likely try to extubate tomorrow. He is running a low grade fever, but so far nothing they have cultured is growing any bugs. The doctors are not terribly concerned at this point, but will continue to watch it. Weston is requiring a lot of sedation to stay comfortable while on the ventilator. Poor baby.

Now for the pictures...please be advised that some of these are pretty graphic. I'll put those at the very bottom.

Just heard it was his big day!!



Emily and her cousin Allie pooped out at their slumber party.



The last few pictures of yellow W








Speaking of yellow, HE'S NOT!! I swear that baby's eyes are clear the yellow is gone! Weston has NEVER had white sclera. His bili level was 13 before transplant...this morning it was 1.2!! Miraculous, I'm telling you!

Ok, stop here if you don't want to see the more graphic pics...







THIS was inside Weston. Poisoning him everyday. Good riddance!



The liver is GREEN. The doctors were shocked at how horrible it was. Biliary atresia did this to my son's liver in 6 months. We MUST stop this from harming any more children.

Finally resting comfortably



Look at his color!!!! No more BA!!

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TCH Day 12::"He's as yellow as a bug light"

Sorry for not posting yesterday. Not much happened. All the major decisions hung in the balance of today and his weight/fluid status.

The only thing of note was our meeting with Dr. Goss, the transplant surgeon. From whom we get the title of today's post. LOL I've never thought of his color that way, but I guess it does fit. Nothing "new" in the way of game changing decisions, but I did learn the following little factoids:

1. Rh factor does NOT apply to transplant. Meaning, Wes is B+, but could receive any B liver. I guess that it would really only make a difference if he were (-).

2. He is currently at 26pts. At 30+ pts, he is eligible to receive an O liver. (B and AB are much more rare than O and A)

We did a lot of "fishing" and laundry yesterday. Wes loves fish!

Getting to see all his fishy pals (and flirting) are the highlights of our walks.

Laundry was just too much fun for him

Ok, so some disappointing news this morning. W gained too much weight over night and will have to have a round of albumin and lasix today. So, we can't go home tomorrow. But, I'm not totally bummed, because Dr. Karpin's goal is for Wes to go home. We'll have to see how he does over the weekend, and the maybe home on Monday?? Better yet, maybe a new liver this weekend??

Finally, believe it or not, I am at a total loss for words. Some truly kind, wonderful people from LT have come up with "Wishes for Weston". They are selling t-shirts and will wear them every Weston Wednesday to support our little man. My heart is so full. I knew we had "the ultimate support system", but Billy and I are completely and utterly blown away by this.

Thank you Candi, Raine, Amy, Sarah and Juli. From the bottom of our hearts, thank you.

TCH Days 7-9 :: Bad Luck Mommy

I received these pics from the Daddy over the weekend:

SMILES, SMILES, SMILES

HAPPY, HAPPY, HAPPY

Over the weekend, he lost 7cm off of his belly circumference. His belly is SOFT and they did not need to diuresis him for the past two days. WOW! When the team rounded on him this morning, the people who have not seen him since Friday were amazed at how great he looks and how happy he was.

Yea!

Dr. Karpin (the big cheese) is on hospital service for the next two weeks. He cut W's TPN down to 20 hours. 

Unfortunately, we spent those wonderful, iv free hours in ultrasound and really didn't get to eat...so our blood sugar was a little low before we had to reconnect. 

Anywho, so why the bad luck title?

I can't help but feel that I REALLY have a black cloud pouring on me ALL THE TIME. Make someone has a black candle lit on me...

SO, the first week here was not the easiest. Wes was cranky and hurting most of the time as we worked to devise a game plan to get him to feeling better.

And he did!! Saturday...for the daddy

E had a great week and was happy and sweet...for the daddy

For mommy, she was uber tired and snotty. Combine the mucous and crying...puke...FOUR TIMES.

The mommy comes back to the hospital, we have to have 3 hour ultrasounds and glucose pokes.

Tomorrow is going to be a good day. Tomorrow is going to be a good day.

TCH Day 6::Switchero

I'm writing from the cozy comfort of my own bed, with my sweet, sleeping princess beside me.

I was SO happy to see Emily!! I gave her 100 kisses and a million hugs :-D

But, I am without my Wes and B. Sadness! This is the first time I have EVER been away from Weston. Of course I've gone to work, but have never gone a whole day without him. It broke my heart to leave him at the hospital. But, he was super excited to see his Daddy.

No big changes in his care...he's still on 24 hour TPN and the 14 oz oral restriction. If you work it out, it's 1.5 oz every 2.5 hours. Uuuuuuggggggghhhhh! I was able to get the following "victories": they will plan on the albumin and lasix every morning unless he is miraculously lighter and belly less distended, so we can AVOID the out of control, inconsolable crying from his tummy hurting. Yes!!
AND, after two days of asking, I finally got the sugar water to dip his binky in to help console him
whilst on his fast.

Better get to bed...work in the morning.

PS: tomorrow is our 6th anniversary! Happy anniversary to the best husbando in the world. Thank you for my beautiful necklace!

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TCH Day 5::Totally Tethered

So, we bought ourselves 24 hour TPN.
AND a14oz oral fluid restriction.
AND this hospital room until transplant {as it stands right now}

Wes had another screaming episode...this time only 30 minutes {woohoo} His tummy was real tight again from all the fluid, warranting another round of albumin and lasix.

We had a restless night and a rough morning. Mom was in a mood; Wes was in a mood...thank goodness GD visited and took over the W. Everyone napped. Yea! We took a wagon ride and checked on our fish {everyone's ok} and then we checked out the cool waterfall in the "cafeteria". Little man so enjoyed his ride.

Tomorrow...the daddy and I are switching shifts. I'm going to home to work. While I am chomping at the bit to get the heck outta here, I don't want to leave Wes. Maybe I will sneak him out with me. I get to see my Emmy tomorrow!! So excited!!! {and the hubby, of course!}
Another item on tomorrow's agenda...counting how many times someone comes through our door. Maybe it was my fantastic demeanor today, but O M G!!! Could we please have an hour without someone bugging us?!
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Location:Fannin St,Houston,United States

TCH Day 4::Good, Bad, Ugly

The Good:
•Thanks to my wonderful Uncle and Aunt, I was able to get out for a bit this evening and have a wonderful dinner with Auntie M and Phillip

•Wes got some wonder bonding time with his God-Papa...he was so calm and content when I got back and super smiley!



•Was able to do laundry without having to wait for a machine

•We got rid of the icky vitamins!! Yes!

•We highjacked a wagon and went for a ride!!

The Bad:
•The fluid overload that the combo of a sick liver and extra fluid from the TPN is causing

•The return of albumin and lasix to help balance the fluid overload

•The nasty rumor that because of his need for TPN and the need for the albumin and lasix after the TPN, Wes will not get to go home and will have to wait in the hospital for a liver



When Scout told W about having to stay, more than likely, he did not respond favoribly
{This Wes/Scout pic is dedicated to Ashley #1}

The Ugly:
•The hour plus screaming episode that occurred this afternoon...poor baby was so uncomfortable and hurting from his belly being so tight.

•The realization that Billy and I will have to commute back and forth between Austin and Houston.


Meanwhile in Austin...
The Daddy took his sweet little girl out on a date to the bouncy house and dinner!!





I am SO looking forward to seeing her in TWO days!!

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Location:Fannin St,Houston,United States

TCH Day 3::Return of Sweet Smiles

Our day:

•The Team bumped up his TPN to 16 hours (from 12)...and told me to not be surprised if it eventually becomes 24 hours.

•Wes gave his girlfriends more smiles than the mommy today. {mommy was displeased to say the least}



•We had lunch with Uncle Johnny

•Yesterday marked 1 month of "waiting" and tomorrow, my precious little guy turns 6 months!

•I miss E like crazy. :-(



•I miss the Daddy like crazy.

•On our walking adventure, we saw lots of fish and met a new friend

•Wes likes to watch the cars, trains and people bustle about from our window.

•Napping



Tomorrow, once we are untethered from the iv, we are going to find a wagon and get off this floor for a while :-D

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Location:Fannin St,Houston,United States

TCH Day 2::Riding Magic Dragons

Ketamine is a hell of a drug.

Wes was sedated, really put under a "general anesthetic" for his PICC placement. Drugs of choice: ketamine (a potent hallucinogen) and propofol (MJ juice). My poor little guy went under cranky and starving, and woke up like a crack head! O M G!! Jittery, crazy eyes, screaming.

He was on edge most of the day and is just now seeming more like himself. He's been eating pretty well, though.

Currently, he just downed a 5oz bottle (muy impressivo!) and is playing in a bouncy seat Child Life brought by. He's having an intense staring contest with the little animals on the seat...maybe the purple hippo is still talking to him.

TPN will be hung at 8pm; labs in the morning (via our new DUAL lumen PICC {thanks for the suggestion, Ro's mommy!}) and we will go from there...




He thinks his hand is an ice cream cone




Poor little guy...flying high on ketamine








My handsome, handsome studly muffin.


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Location:Fannin St,Houston,United States

TCH Day 1::Grey Day

You know how a president ages from the stress...it's starting to take it's toll on me. I found my first grey hair. In my EYELASHES! A grey eyelash?!?! I did not even know your eyelashes could or would grey. Maybe I'm turning albino from lack of outdoor exposure...like a mole-person.

So, here we are in the hospital. Again. It was a miserable, nasty drive in. It has rained for almost 4 days. Seems as though the same goes for Houston.

Tonight we are just getting settled. All the fun starts tomorrow. No pokes today and I think I was able to finagle no pokes until he is under anesthetic gases for his PICC tomorrow. Only bummer, he has to be NPO (unable to eat) after 4am. That is going to make for a cranky bébé.

Auntie M and Uncle Johnny visited this evening and brought us a delicious home cooked meal. Yea! In case you were wondering, hospital food is insanely unhealthy and disgusting. So our care package was super much appreciated!!

I guess I should go shower and search for more greys while Wes is asleep.




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Location:Fannin St,Houston,United States

Black Cloud

Just as Wes and I were enjoying a lazy morning all cuddled up in bed, I got a call from Julie, our transplant nurse. After Dr. Fishman reviewed W's labs and conferenced with the rest of the team, they felt strongly that it was time to start TPN (iv nutrition). They said that his body is just not absorbing nutrients correctly. I was crushed.

We are leaving Sunday for Houston. They will admit us and get us ready for a PICC placement Monday, so we don't waste anytime starting the TPN. Our projected stay is a minimum of 5-7 days. TPN is a volatile thing and can present many problems as far as blood glucose level, and, for extended periods of time, can cause liver damage. Great.

As if that, in and of itself, wasn't enough bad news...my family is dealing with some other major issues.

Praying God hears our prayers...they say He doesn't give us more than we can handle. I am close to, if not at my breaking point.

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Wonderful Visitors :: Day 3

We are home!!

Yea!

We started the day at midnight and woke up LITERALLY every two hours on the 15. TO THE MINUTE.

And then, at 5:15, the pokes came. :-(

Seems as though the vitamin K did its job and the super awesome iv was no longer able to draw back blood for labs. Two pokes and only one of the two labs collected.

We had to have that last lab drawn before we could leave...once again, the anesthesia department came to the rescue! Love you guys! 

Then the really good part...all of our wonderful visitors!

Nana drove up from SA to keep us company today. Mr. Wes was happy to see her and gave her a big smile.

Then we had a surprise visit from Dr. Meyer (W's surgeon). He heard we were inpatient and came up to say "hello". Have I mentioned we have wonderful, caring doctors?!

And our final visitor was Ms. Jo, one of the DCMC Chaplains.

She was so kind as to arrange Wes' baptism on Monday evening and is such a lovely person. 

She is another one of God's angels sent to us.

Getting some sweet love from Ms. Jo

So, this admission's wrap up...

The albumin has helped move some of the ascites (fluid in abdomen) back to where it belongs. Wes' belly is still very distended, but it is not nearly as tight.

He did not loose much weight from the diuretic. But, they have started him on another oral medication that will help keep the fluid where it needs to be.

His albumin is a little better after the two rounds. His total bili is 21 and INR still is a little elevated at 1.5, despite the vitamin k infusion last night. 

We will follow-up with Dr. Z next Tuesday and Dr. Fishman is reviewing everything over in Houston. No changes other than the new medication.

Smiles (and a little raspberry) when we told him we were going home

Making like a tree and leafing this place

Emily was so happy to have Mommy and Wessy at home. And we were glad to be at home with her.

That little mischief maker...I'm not going to go into it now, but her pediatrician and poison control had to be called this evening. She's fine, just a very smart and curious trouble maker. 

I am so thankful to be home with Billy and Emily tonight...to shower in my own bathroom...to give Weston a bath in our big tub...to tuck my sweet little girl into bed tonight....to sleep in my own bed...for all your continued support, prayers and love.

Call Me Miss Cleo :: Day 2

I am in the wrong profession! I should start my own psychic friends network. It's 6:15pm and we are still here...for another day.

Wes didn't have a huge response to the lasix. He lost 0.02 kg (0.044 lbs) after both rounds of albumin and lasix. I don't know, I was expecting more?

Lab-wise, his liver functions all improved, perhaps a result of the fluid being where it belongs. His INR (clotting time) has continued to rise, despite the vitamin K supplements we started at home.

SOOOO, I had two choices:vitamin k IM shot (go home this evening) or via iv (stay overnight). Poor Wes. He's been stuck enough for two people. Mama Bear opted for iv. And what a fabu iv it is (have mentioned Dr. M is awesome)! We were able to draw blood from it, so no need to poke W for labs today!!! YEA!

Our happenin' day:



The sun didn't shine yesterday, so we got our own.



Watching a little tv



Watching the birds and people on the Outside.



Delicious napping. Someone sure has been snoozing a lot. I wonder if he is taking advantage of being able to nod off without a 3' tall big mouth running a muck around him. ( ;-p I miss my E!)



Field Trip to the playroom.



Stud watch 2011

Daddy and E are coming up for a short visit. And then, we may call it an early night.

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Ascites, Albumin and Lasix! Oh my!! :: Day 1

This has been a very spiritually fulfilling day. The first one in a long time...as we were getting out of the car in the hospital parking lot, I noticed the lady that parked next to us was Gloria, one of the phlebotomists that has worked here and there with Weston since our first hospitalization in August. By no means do we see her on a regular basis. But, she remembered Weston by name. We talked for a few minutes and she told me that Weston (along with another baby) has stood out in her mind and she and her friends had been praying for them. She was just so kind. I was totally taken back. Gloria, I hope somehow, some way you are able to read this. You are truly one of God's angels that walk amongst us.

We are very fortunate to have buds in the anesthesia department and Dr. M, with her awesomeness, started W's iv and got his labs for us. Thanks Dr. M!!




Mister not thrilled to be in the pre-op waiting room. He senses sharp objects.

Wes weighed 18.89lbs. His total bili has continued to rise, currently 26.4. His albumin improved just a bit from last week, but the doctors felt that the albumin and lasix were still warranted.




Recovering from the run-in with the sharp objects.

We had a bunch of visitors today. GD came around lunch time and spent a good part of the afternoon with us.



The name's Golden. Weston Golden. And my trusty sidekick, Scout.

We also had a nice surprise visit from Tara. She is so kind to come visit us every time we are at Dell.

And, of course Daddy and super awesome big sister E were here tonight!

We had the opportunity to have an emergency Baptism for Weston. Being on the transplant list, with the potential to be called at any given time; coupled with my inability to get my you know what together and organize his baptism...it just felt like the right thing to do.



Father Anthony with our newly Christian young man.

We asked if he could throw in a mini-exorcism for the E; but he said she was ok. ;-)

So, Wes has had his first round of albumin (protein to pull free fluid back where it belongs, and out of his abdomen) and lasix (diuretic to shed the excess fluid that has been pulled out of his abdomen). His belly feels a little less tight tonight. Although, I was expecting a little more response from the lasix. He has another round in the morning, and then labs, then home?? Possibly!

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Location:DCMC

A Snuggly for Emmy

I am happy to say that I have finished my first crocheted blanket!

Dedicated to my beautiful, kind, loving daughter.



Started: December 29, 2010
Finished: January 10, 2010

Design:
Repeating Granny Square
22 Rounds
36"x36"

Yarn:
Baby Bee {mint charm, angel}. Yarn Bee {sweet mocha}




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What Monday Holds...

Well, I thought his weight gain from last week would be good news. Seems as though the transplant team is suspicious of his 1.5 lbs. (18lbs 5oz) That, coupled with a low albumin level leads them to think that he has ascites (fluid in the abdomen) that needs to be drained off. So, Monday we will be admitted to Dell Children's for iv Lasix (diuretic) and albumin. Dr. Fishman also threw around TPN if his vitamin levels don't reflect good absorption.

I am very sad tonight. Right now, this is supposed to only be a few days in the hospital. But you and I both know that it is never just a few days. I am very worried that Wes will be in the hospital now until he receives his transplant. Maybe we will get "the call" this weekend...


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Emmy Loves Art Time

One of the many reasons I LOVE E's school :: art time everyday!






Today's theme was spray bottle paint. They are much more brave than I! Tomorrow's theme is Elvis' Hawaiian Birthday. Can't wait!


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Wordless Wednesday: You Lookin' At Me?!

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2011 Goals Series :: Mind

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Random Cuteness

I don't know how in the world these haven't made it up yet!







"Helping" mommy bake.





All stretched out and sleeping sweetly <3





Riding the carousel at the mall.





Mid raspberry





Loves her some chips y guacamole!





Another bear suit pic!!!!





Precious, precious babies <3 <3





It's all fun and games until someone poops the tub...
Poor little Wes' liver belly.





Now that's a happy boy!





Two clean little monkeys
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