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

Seriously...What a Freaking Long Day

0000-Sleeping soundly in our plush hotel room...tons of awesome pillows, I might add (Courtyard Mariott on Main is the shizz!)

0230-Weston wakes up with a fever. We don't travel with a thermometer; I guess we need to start...Spend over an hour trying to console our poor little hot potato and trying to decide if we should go to TX Children's ER or wait for our appointment at the Liver Center.

0400-Wes finally goes to sleep. Mommy and Daddy enjoy the awesome pillows for a little while longer.

0700-Wes wakes up sweating like his daddy in church, we are rushing to get dressed, packed and checked out to catch our 0800 shuttle.

0800-Shuttle from the hotel to the Medical District. Most depressing bus ride ever, as our fellow patrons were mostly cancer pts of all ages.

0845-Meeting with Dr. Fishman, his transplant nurse coordinator and dietitian about Weston's plan of care and transplant future. Still running fever in the office...we will be admitted from the ER to Texas Children's

1040-Check in to the ER and are placed in a "room"

1200-Wes has had some labs drawn through his central line and had an abdominal ultrasound. Waiting on a room

1400-Waiting on a room

Waiting in the ER's cast closet...seriously

1600-Waiting on a room

1800-Waiting on a room, considering going AMA and driving back to Austin to Dell Children's

Holy Frick! STILL waiting!

2045-WE GOT A ROOM! 10 HOURS of waiting in the ER closet, we FINALLY have a room!!

We are currently on the 14th floor and Wes is doing ok. He is very restless, though; can't seem to get comfortable or full. Not to mention the parade of people messing with him. We were told to plan on staying at least until Friday. They are going to try to get some of the preliminary testing and evaluations done to get him on the transplant list. 

We have a very nice, corner room with a great view. Nice nurses and staff. Super cool GI attending. If we could have bypassed that whole ER disaster, I would be in love with TCH. Oddest thing...featured camel racing on TV. Not sure what that's all about...but W seems to be obsessed. 

View from our room

Rumors for what tomorrow holds: EKG, echocardiogram, more labs...

We Made It To Houston

Weston had his first road trip today! He had a great drive from Austin to Houston. And considering that he hates his car seat and riding in the car, it was a miracle to say the least.

We made great time and checked in to our hotel. After relaxing for a bit, we were so excited to see Aunt Margaret! Great Aunt and God-mommy extraordinaire. We had such a blast at dinner. Shame we waited till we had an appointment to come for a visit.







Not digging the crazy drivers and roads in Houston.







With his Auntie M







Super cuteness, courtesy of Mrs. Greco!







So cute I had to show it again! He calls this his "coy" pose.

We are heading over to the medical center tomorrow morning for our appointment with the Liver Center. We will keep everyone posted.

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Location:Main St,Houston,United States

Silly Beans

So sweet and precious!!

What? Never seen a guy in a pink chair before?

Awesome zebra pj's

Sweetest little boy in the world

Watching Yo Gabba Gabba early in the morning

Weston's 3 Month Pictures

We went to see Ms. Robin last week for Weston's 3 month portraits and Christmas pics.

It was a little odd showing up to the studio before Halloween and in 90 degree weather in red Christmas corduroy and tights.

But look what we got:

http://www.robinwinklesphotography.com/Favorites/weston.htm

And these are just the beginning...a teaser, if you will.

This is going to be a mighty pricey order...

Update on Weston:

We were planning on having his broviac removed this week, but then got a call from the Texas Children's Liver Center in Houston. We have an appointment to see one of the hepatologists on Wednesday, November 10th. I don't know what is planned for this visit, so we wanted to play it safe in the event they needed to draw blood or do some procedure that required an IV. 

Dr. Z ordered a bunch of labs on Wes this past Monday.

His coagulation tests were all normal and it appears as though his biliruben went down a little bit. No celebrations, though. Seems every time we raise our hopes with a dropping bili, it goes right back up. 

At least it isn't increasing...

Wordless Wednesday: Just Priceless

SCARY!

Another Halloween has come and gone.

I am a little bummed, because as much as I love Halloween, I haven't been able to properly prepare for it with all that is going on with Weston.

But, it's not about me.

Judging by E's reaction, it was the best Halloween EVER!

The Mommy rushed home from work to find her little bruja and monkey all ready to go Trick or Treating!

 The Daddy and E had practiced earlier and she was ready!

She was super excited with her "tick or treat!" and always said "thank you".

After each house, she would say, "I want to try again!!"

Wes enjoyed the night time walk, but was NOT digging the monkey get up.

Checking out her "candy, candy, candy".

 After a few choice pieces of loot, someone decided on their own, it was time for bed!

It is really as much fun, if not more, getting to enjoy Halloween as a parent. :)