Via Con Dios, 2010

This has been some year.

Blissful highs and devastating lows.

Our year in review:

January
CakeCake Sundays with Daddy

February
Silliness in the SNOW!

March
Baby Golden II is ALL BOY

April
Spring Shenanigans

May
Terrible Two's even before she's 2!

June
Happy 2nd Birthday!

July
Welcome to the world, my Studly Muffin

August
Much Needed TLC From Big Sister

September
Baking Therapy

October
Bruja!

November
So Thankful For Peaceful Sleep

December
Most Precious Gifts of All

Praying for a HEALTHY, happy 2011 for our family and yours.
Happy New Year.

Hello Again, Houston

We are back in Houston today for another checkup with Wes' transplant team.
We got in yesterday and had labs drawn...first two sticks in over a month.




W was not too thrilled to be without his broviac in that regard.

We met with Dr. Fishman, Julie our transplant nurse, and Stacey our dietician. Can you believe they used the term "scrawny" to describe Weston?! They are pleased with his weight gain and he is still growing well: 26" (50th percentile) and 16.94lbs (a lot attributed to liver)
So the meat and potatoes of our appointment:
•Wes was approved by UNOS for more points, he is now at 24 PELD points (up from 10)
•Bili and INR (clotting time) are up and albumin is down - all expected signs that his liver is failing. Thankfully, nothing is bad enough for hospitalization right now.
•All of his feedings must be supplemented, so no more direct breastfeeding, although I can still pump
•We avoided the dreaded NG tube today-yea!!!
•As I type, we are waiting for an ultrasound of his abdomen to check for any fluid (ascites; also associated with liver failure)

All in all, a good appointment. Hopefully, with the increased points we will get our call soon.

Posted using BlogPress from my iPhone

Location:S Braeswood Blvd,Houston,United States

Merry Christmas From The Goldens

We just missed Santa! Weston's on the left, Emily's on the right.

 

Checking out her loot.

And so it begins!

Sweet Wes in his new ride.

Santa brought E an iXL loaded with her favorite pics and Yo Gabba Gabba songs. Check out that crazy bedhead!

Astonished that the puppy knew his name!

The aftermath of Hurricane Christmas 2010

After the dust settled, the kiddos decided to check out each others toys...

Yes, she climbed in there herself. Yes, she fit. Yes, she knows she too old for that toy. Yes, she is a cute mess.

Wes loves Emmy's Dancing Mickey!

Mommy and Daddy's favorite gifts.

 

Another Week Down

What a week...

Emily turned 2.5 years old on Saturday; Weston was 5 months on Sunday. 

Billy and Emily have been off on Christmas break since Monday.

Daddy played golf Tuesday and Mommy had a girls' night.

Today, we ventured to see Santa twice...we waited and waited, but never saw him.

No news from Houston. We have an appointment with the Liver Center on the 29th.

I still jump every time the phone rings. 

I don't think my little man is feeling well these days. While he still smiles, its not like before...

The last few nights, he has had horrible screaming and crying fits. Nothing will console him and he sounds like he is in pain. It is so hard to watch...and even harder to understand.

Hopefully, he will get his new liver soon.

Emily is keeping us on our toes and entertained, as always.

Just a little sampling of her shenanigans...

I love to make Wes laugh!

Sneaking around with a stolen binky...

A funny face or two...

NAKEY BOOTY BOOK TIME!

Daddy says I must be going to the movie, 'cause I'm picking my seat.

**pffffffffttttt** Ahhh, that feels better.

Can you believe she just did that?!

On THE List

We received some great news this afternoon...Weston has officially been added to the liver transplant list.

Since he is still relatively "healthy", he does not have many PELD (Pediatric End-Stage Liver Disease) points.

Right now, he is listed with 10 points, but our liver team is petitioning UNOS to increase his score to 24. 

Every time the phone rings, I jump. This is going to be some process...

We are very grateful to Julie, our transplant nurse. She busted her butt to get him listed so quickly. I think it was their goal to have him ready before Christmas...

It is a very unsettling feeling to pray and hope for a liver. The liver has to come from a donor.

It just doesn't feel right.

But, we continue to pray for Weston.

Untethered

Weston had his broviac removed this morning.

In a few days he will be able to enjoy his first real splish-splashy bath since the first part of October.

I am glad it is out, because it can be a major source of infection and I know it bothered him. But, I am also wary of any testing to come, because our line to draw labs is now gone...

It's been a pretty rough week.

My gut is telling me that Wes is teetering on the edge of a downward spiral.

As mentioned previously, his liver is now hard and spleen enlarged. We also learned that his bilirubin has gone from 6 to 10 and he is looking more yellow to me. Also, his stool has suddenly lost its color.

He is scheduled for his echocardiogram (ultrasound of his heart) next Thursday. This is the last test needed to present him to the medical team and have him added to the transplant list.

Our Houston liver doc called me yesterday to check in, and said that they may pre-post him with the pending echo results. Hopefully, Wes will be listed before Christmas. 

I can't lie, I'm pretty sad right now. 

I know I need to focus on the present and enjoy him being at home and his first Christmas and keep my spirits up for Emily and make sure that she enjoys the holidays and it is just as special and happy as always...

Sometimes it is hard not worry about what is to come.

Oatmeal...A Photo Essay

Oatmeal? OK! I'll try it!

Huh. Not what I was expecting.

Yeah, this is seriously gross.

No more, Mom!

I tried it...I don't like it. *baaaaaaarf*

Yet you keep shoveling it in...

Help!

Wordless Wednesday: Sweet Love

Weston Update

We saw Dr. Z (Austin GI doc) this morning.

I expressed a little concern that MAYBE the transplant team was being a little too aggressive in wanting to get him listed and all that associated jazz.

My biggest immediate concern was the possible start of TPN (total parenteral nutrition, aka IV nutrition) if he had not gained sufficient weight.

TPN is a huge pain with MANY complications and serious considerations.

Weston was 15lbs 1oz (OMG!) and 24.75" today!

Dr. Z felt that TPN was not needed.

After he assessed Weston, he said that his liver was now hard and his spleen was enlarging. And therefore agreed that we should continue pursuing transplant at this point in time. He again reiterated that it is better to transplant him when he has been able to compensate and grow normally, as opposed to going into liver failure and then dealing with all those complications added on top of the transplant, itself.

It was very disappointing and upsetting to get the news that his liver is hard now...meaning there is significant scarring and damage.

I guess I keep denying that he really does need a liver transplant...

Once out of the office, I promptly called the transplant nurse, Julie, and reported the highlights of the appointment. AND they are thrilled with his weight gain and he will not need TPN! Which means, he can get his broviac taken out!! YEA!! Wes longs to splash and play in the bathtub, but has been restricted by not getting the broviac wet. Maybe before Christmas?!

National Biliary Atresia Awareness Day

Today is NBAAD! 

Weston was one of 300 babies diagnosed every year with this horrible liver disease. 

Hopefully with education and research, we can put a stop to BA and all other pediatric liver diseases.

Click the following links for more information about the disease and the stories of Weston and other children with BA:

Cincinnati Children's Hospital

baaware.org

Week In Review

The Good:
•The Daddy took Emmy on a date to her first movie
•Wes weighed 14lbs and was 24.25" tall at his check up AND had his IV antibiotics d/c'd
•The Mommy's cheesecake was a Thanksgiving hit
•The Daddy enjoyed a nice morning of golf
•The Mommy had her first mani/Pedi since the evening she went into labor with W

The Bad:
•My grandmother passed away just before Thanksgiving
•The car was in shop for engine issues
•The Mommy vs. E 60 minute Battle Royale regarding nap time
•The Brazilian cheese bread-blech
•Vaccine aftermath: low grade fevers and crabbiness

The Ugly:
•9 vaccinations! 5 for E, 4 for Wes
•The last 45 min of the ride home from SA. Non-stop screaming and crying x2 from the backseat...and a little from the front seat, too
•Longhorn Football, blech!

And now for gratuitous cuteness:



My Lovies <3



Being Silly in the Doctor's Office



Thanksgiving Stud




Eating her creation of yogurt with goldfish crunchies...blech!




My sweet little angel


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Happy 4 Months, Weston

Dear Weston,

Today you turn 4 months old. I still remember holding you for the first time like it was yesterday. The time is going by too fast. I feel that with all the medical issues, you are being robbed of your infancy, and probably some of your childhood innocence... We still go to at least one doctor's appointment per week, and you have been hospitalized 4 times. Every month I hope and pray that the next month will hold better fortune for you. I guess, in a way this past month has not been too bad. With the placement of your central line in early October, you have not been stuck in well over a month. (except for last Thursday)

My sweet, little boy...you are such a joy. Your big smile lights up the entire room and our hearts. Maybe it is all you have been through, but you seem very aware and knowing...like an old soul.

Just this past month, you have started laughing. What a wonderful sound! You love to laugh, too.

I adore you. I love watching you rub your little eyes...sleep with your arms over your head or one across your eyes, like I do. I love your determination to not be restricted by your swollen belly.

You have really become much more active in this last month. You enjoy playing in your gym and MUST sit up to see what is going on...and watch a little tv.

You love your sister. You smile when you see her picture. You beam at her when she comes home from school. You know her voice and turn your head toward the phone when we talk to her.

Weston, you are sleeping in my arms right now, so content...and so am I. Sleep peacefully, my happy boy.

I love you.
Mommy




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A Little E Time

Yesterday, Emily learned some life lessons the hard way...

1. We don't put 9 volt batteries in our mouth

2. Gravity is a b****

3. Be mindful of your surrounding area whilst pitching fit

The girl takes it all in stride though.

We ended the day on a happy note. Thank you, Fresh Beat Band.

Home Again, Home Again

We were discharged from TCH at 3pm yesterday. Made it to San Antonio at 6pm. Had dinner, and then pulled into our driveway at 9:15pm.

Oh how wonderful it was to see Emily!

She was so excited to see us, too. She was so excited, that she tripped coming down the stairs and rolled half the way down. OMG! We were so scared. Thankfully, she emerged physically unscathed, just a little shaken up.

We love that little girl. And we despise being away from her for so long and often.

But, we know she is in good hands and enjoys being spoiled by Nana and GD.

**HUG** for my sweet E!

So, some things we learned...

1. Change of opinion on the cause for infection...again. Dr. Fishman checked in on us Monday afternoon and said that he thought it was a central line infection and today, our infectious disease doctor agreed. His liver function and biliruben did not worsen with the infection, and that is unheard of in cholangitis. So, it must have been the start of the line getting infected. 21 days of IV antibiotics...

2. Much to our displeasure, the prospect of me donating to Weston is very small. Because of his small size, he needs a small liver...even a lobe of mine would be too big for him. Also, the physical criteria for being a living donor is much akin to being an Olympic Athelete. Unless they have a brownie eating competition in the Olympics, I do not meet that criteria. 

I am very sad to report that currently, his donor will have to be a baby of the same age or a small child.

I really don't want to go any further on this topic...it is very upsetting.

3. Post-transplant recovery, Weston will not have any physical restrictions. They said he can play contact sports if he wants! 

4. We all need to be updated on our shots and get flu shots. EEP!

Holy guacamole, Thanksgiving is next week...

We have an appointment for E and Wes on Monday with their Pediatrician for well checks and vaccines. Tuesday, a follow up with Infectious Disease. 

Dec 1st, back to Houston for a follow up with Dr. Fishman.

Oh, and I am sure Dr. Z is in there somewhere, I just have to check my calendar!

TCH-Day 5

No post yesterday because, well there was nothing to post.

For as INSANE as this place is during the week, it becomes a ghost town on the weekend!

You can actually get on an elevator and walk through the lobby without threat of being trampled.

On the flip side, nothing is open! 

So, the liver team rounded earlier and said that the type of bacteria in the culture was identified and he no longer needed the coverage of two antibiotics. Weston is now only on one IV antibiotic, in addition to the rest of his normal medications. And, he has finally been weaned off of the steroids. Yea!

The docs said now that the cultures are completely grown and identifies, it would appear that the fever was probably a result of the first stages of cholangitis, rather than a central line infection.

(certain types of bacteria grow in a central line, and are very hard to kill once in the line-not the case with Weston)

SO, we get to go home tomorrow, right?! 

We keep getting very wary "maybes".

I am not quite sure WHY they are hesitant to send us home. We are already established with a home health company and giving the antibiotic IV is old hat for us.

PLEASE LET US GO HOME TOMORROW!

To add more confusion to the situation...Thursday Weston was taken for an echocardiogram (part of the transplant work-up). The tech removed his onesie and promptly returned us to our room because the broviac rests in the exact area that the echo is performed. 

I left with an understanding that:

a. the broviac could not be present for the echo

b. he needed to be sedated for the echo

c. they were going to arrange to have the echo done in Austin at the time that they have him under general anesthesia to remove the broviac

We got wind of an echo tomorrow. Not quite sure WHAT has changed in the above equation. We are slightly confused. 

PLEASE LET US GO HOME TOMORROW!

TCH-Day 3

What a great day all around, and nothing but good news!

1. Other than the initial blood culture taken from the broviac, all other cultures have been negative. Meaning, we caught the infection right at the beginning, and the antibiotics are working. If things continue along this path, we should be discharged Monday and get to keep the line. Yea!

2. As part of the liver transplant evaluation process, Weston's development had to be assessed. He was ahead developmentally on everything except gross motor. And with gross motor, I guess we'll have to just settle for "on target". ;-) His big belly inhibits a lot of his movement, eg rolling over. The developmental psychologist was not concerned at all though, and said that very soon after transplant, when their anatomy returns to normal, they rapidly achieve any milestones that may have been missed. 

And of course, Wes flirted and charmed all our visitors today. He even got a super cool mobile as a result of the flirtation. LOL.

Hi ladies...welcome to my hospital room.

Yea! Toys!

TCH-Day 2

We found out this afternoon that the blood cultures collected from Weston's broviac grew some bugs. 

Bummer. But, it was just a matter of time before this happened.

He is being treated with two different antibiotics, Zosyn and Vancomycin. 

The hope is that the infection is just in line, and not systemic.

They had to draw some blood from his arm today to determine this. First time he was stuck in over a month.

The hope is that the antibiotics will clear the infection up, and that they will not need to remove his line.

This also means that we may be here for a bit longer than expected...for sure through the weekend.

BUT, on the bright side, Wes is happy and his direct bili was 2.2 today...the lowest it has ever been! 

He was approved by insurance for transplant evaluation and we are continuing with that. He had an EKG and a chest XR today, and of course more blood work. 

We had a slew of stupendous visitors today: Auntie M, Uncle Johnny and Phillip. :-) We were so happy to see everyone! And to have the company. These days get really long when you are held captive.

Last but not least; check this out...

Ugh! Miss that silly baby girl! <3