Happy 1 Month, New Liver!!

It has been a month already.

A month of joy and happiness for us.

For our Donor's family, it probably has not been so easy.

Please remember our Angel, our Hero, Weston's Donor today.

And, please continue to pray for their family.

Weston is continuing to thrive and make up for lost time.

He is sitting up by himself for longer periods of time.

Eating solids more and more.

Pulling hair...

Belly laughing.

He really is doing well. And you can TELL he feels better.

The last two days, he has taken over 28oz by mouth! You go Wes!

Little Man's thighs are chunky and he is filling out quite nicely.

Check out how big he is!!

His Fonzie impression.

So, I figured that since he was doing so well taking all the formula by mouth and even some of his medications, they would take his NG tube out Wednesday. {more than likely}.

Well....

Face Tape was coming loose, again.

And after his bath, it was almost non-existent. I went searching for the roll of missing tape.

With a cough/sneeze, NG partially was out...so I pulled it.

If they want it back in, we'll do it at our appointment Wednesday.

Until then...

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Down By The Bay

It's been a full day!

Unfortunately, it started early with labs. 

Boo.

The good news, is that W's ProGraf level is finally where they want it, for now anyway. AND we don't have to get labs until our next appointment on Wednesday! 

4 whole days without pokes!

Yea!

After labs, we drove down to my aunt and uncle's bay house in Galveston.

I hadn't seen it since they renovated it after it was flooded in the hurricane.

It is absolutely beautiful. They did a great job.

Uncle Johnny and W lounging.

Weston is doing SO WELL with his gross motor skills.

Rolling over is old hat now. He still has to work on getting the hands in the right space for proper tummy time, but he eventually gets there. 

His neck and back muscles are regaining their strength, and he holds his head up high while on his tummy.

Tuckered out from all the exercise.

Emily had a great day at school.

So much so, that she sang "Great Day" a la Fresh Beat Band on the way home.

I wish I could post the last few videos of her performances that the daddy has sent me.

She's such a cutie. 

I miss her.

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Our First Post-Transplant CheckUp

Sorry for the delay.

Yesterday was Weston's first post-transplant check up.

We have finally found a lady in the lab that can get the required blood with ONE stick and it is sooooooo less traumatic. Ms. Meeka, we LOVE you.

Julie (transplant nurse), Stacey (dietician) and Dr. Fishman thought W looked great.

He has gain 0.1kg since discharge, putting him up to 8.6kg (~18,9lbs) and is 27" long!!

The last time I remember his length being measured, he was 24". 

Wow!

They said all his labs looked great and are continuing to improve. They have re-adjusted his ProGraf (anti-rejection) drug, so we must have blood drawn again tomorrow morning. Ugh. All these pokes. At least Ms. Meeka knows what she is doing!

The Daddy is starting to feel better. Unfortunately, Dr. Fishman said "NO WAY" to seeing Weston until next week. Speaking of next week, we may be on our way home after our Wednesday appointment!

Life on the Outside

I was looking at Wes just a while ago, and it dawned on me: he looks like a little boy. He has grown SO MUCH in the week we have been out of the hospital. Totally unbelievable. Everyday he is getting stronger and doing more. We've been working with him to roll over, spend time on his tummy and sit up...all things he was unable to do before because of the size of his abdomen. He can roll on his own and is pulling himself from a reclined position to sitting up in his carseat! You go W! He is still steady on his food intake: 2/3 by mouth, 1/3 at night via NGT. And he is slowly warming up to baby food! Some days he wants nothing to do with it, others he is opening wide!
He has also been jabbering up a storm in the last few days! And as always, ALL smiles and the sweetest baby you'll ever want to meet.



Hanging out watching YGG




Tummy Time



Rolling over!




Getting some love from Cousin Allie.

We go in for our first doctor appt since discharge. I can't wait to report the stats on his hoss-liness.

News from the homefront:
Poor daddy was diagnosed with flu on Monday. Ick! He's been trying to take care of E and himself. He says that Emmy was super ticked with him because he has been no fun :-(
I talk to Emmy every night on "FaceTime". It is so wonderful to see her. She gets SO excited to see her little brother <3 Tonight, she had a stirring rendition of "I'm a little teapot". She owned that teapot! Go E!!

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Fabulous

THIS is what freedom should be like!
We had a wonderful, uneventful day. I'm getting the hang of the med schedule; Wes took 2/3 of his required ounces by mouth; and we enjoyed some time outside.

The Tape Mustachioed W



Poor Daddy is not feeling any better today. Poor Daddy. We hope he gets better soon. He told me he was going to fire his current nurse:



As she is very moody, demanding and unsympathetic to his current state.

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It Was a Full Moon, Alright!!

Weston's first day of freedom was not fun, to put it mildly.

First of all, I am in absolute awe of all you Liver Moms and Dads that are not in the medical field. I'm a seasoned nurse and all the meds, formula schedule and feeding pump issues are quite intimidating. Bravo to you!!

We had to be at the TCH outpatient lab by 8am. Which meant rising before the sun.
Poor Weston's blood letting was pretty damn traumatic. I have never seen him sweat that much (-hold that thought). After two sticks and barely enough blood for the two most important tests, I politely told them that they would not be sticking him again.

We get home, Nana comes in and in less than a second as I turned to put his bottle on the side table, the NG tube was out...I really wanted to leave it, but my gut feeling along with Julie and Megan's (Ro's mommy) perspective, we decided to go to the local ER to have it placed.

Yes, I could have done it; but I really didn't want to. Moms shouldn't have to do that sort of thing.
A word of advice: if ever in the Katy area, do not EVER go to Christus St. Catherine's. Too much to delve into, but I feel it very necessary to call it out. We left AMA...

AND, to top it all off, the daddy is sick this weekend. :-( he can't be around Wes, so I had to call in this weekend at work.

Full moon!!! Why do you thwart me so?!?!

Weston is now sleeping the trauma and stress away. Poor baby. And I am going to follow his lead...



Stinky Butt sans NG...AGAIN!!



Relaxing with sweet Bella taking watch.


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Liveration!!!

I can't believe I'm really going to say this....Weston is out of the hospital!! Yea!!!!!!



We got official word this morning. Someone was happy to get that news!

We had our medications and tube feed pariphineala delivered to the hospital.

And got dressed to go! Thanks to Ro and Mommy for our spiffy going home outfit!! (and awesome onesie and yummy cake!!)(Ro looks fantastic!!)




We are being discharged locally, meaning we will have to keep W in Houston for the next week or two. That's ok! My aunt and uncle have graciously opened their beautiful home to Wes&Co.
(Thank you so much! We love you!!)

We're in the truck! Making a break for it!! Uncle Johnny, let's GO!



Enjoying his first real bath in over a month.



All snuggled up and ready for bed. With no one bugging us!



We have to go in for labs tomorrow (boo), but then Nana and Daddy will be in!

It is so nice to be out of the hospital.
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Location:NOT TCH!!!

Weston 2.0 Update

TCH Day 30::Post-Transplant Day 18

I see the light! It is bright and beautiful! Growing stronger by the minute!!
I see the light at the end of the tunnel!!

The night Weston had his transplant, someone asked me how long I thought he'd be hospitalized. I pulled out my calendar and said "February 16th". If we had all our home supplies available, we would go home tomorrow. Unfortunately, we don't....
So, we'll have to settle for Thursday!!!!
(I'm still taking credit for my nursing intuition. It is supplies keeping us here, not recovery!)

So, Wes is doing fabulous!
So fabulous that he decided at 5am that he didn't want nor need this stupid NG tube anymore.



I mean, could you argue with this face???

Evidently, they could. NG tube is back in place. That was unpleasant.
I spent the ten face-tape-free minutes just kissing and pinching those sweet chubby cheeks!

As a preliminary discharge celebration, we went exploring and found a garden and W got the first bit of fresh air in a month!! He acted like a mole, all squinty and such.




He's eating pretty well, taking 3-3.5oz out of the 5.5oz they want him to eat at each feeding. We are having to put the rest in his tube. Looks like we'll probably go home with the tube. It's ok, I'm glad to have it right now for meds. He will have to take 11 medications everyday. One as much as 9mls!

I estimate ~36 hours left!!


Cuteness Since Saturday...






Weston's stalker fish. Seriously.



She did NOT want to get up.



Happy Valentine's Day, Ladies.



OMG!!! Look how grown up she is!!!
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Smiles!!!!

TCH Day 27::Post Transplant Day 15

Weston was downgraded to a regular room on the transplant floor today!!

And with Daddy there, W is nothing but smiles!!

Raspberries!!







Finally free to walk around!! He went fishin' :-)



Snuggles from home!!


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Weston 2.0 Update

TCH Day 26::Post Transplant Day 14

I have to share a picture of some of the best, most loving people in the world:



This is most of the faculty and staff of Lake Travis Middle School in their "Wishes for Weston" t-shirts.
{LTMS is currently where Billy works, and where I was a school nurse before returning to the hospital.}

I will never be able to sufficiently describe the sense of family LTMS and Lake Travis ISD exude. Everyone gathers together to celebrate your highs and carry you through your lows. To say that they are an amazing group of people, is an understatement. Both Billy and I are so incredibly blessed to have each and every one of you in our lives. We love you.

In the center of our universe, TCH that is, chaos reigned supreme this morning and early afternoon.

As you may remember, I gently suggested another PICC placement was in order, and they were going to squeeze us in. They sure did. We got in before 11, and PICC 2 was in place in less than 30 minutes. Yea!!

We got back up to his room, and all the doctors descended upon us at one time. Seems as though W may have a virus. His numbers were a little skewed today. May be the cause of his fever the other days. But, he's not acting sick. In fact, the flirt is back in full swing. And, we may get downgraded again and move up to a regular room! Isn't it funny that the closer you are to getting out of the hospital, the higher and further away from the front door you go?

And then there was that whole PICC bleeding issue. It's fine, just a speed bump.

Oh, and today was switcheroo day with the daddy. I'm home for the first time in 2 weeks!! Speaking of going "home", seems like our goal for discharge will be Tuesday, February 22. Let's keep our fingers crossed!!

Ready for pics???

Weston's thoughts on the whole PICC debacle.




Sleeping. Seriously. What's the deal with the leg?? Working on his lower abs??




Grateful for his new PICC



Just kidding. He was happy to see his daddy.


Dinner with Nana and My Pumpkin!!



My snoozy bed-mate!


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Weston 2.0 Update

TCH Day 25::Post-Transplant Day 13

GIVE MY SON A PICC LINE!!!

Perhaps not Oscar-worthy, but a similar situation did happen today.

We lost both of Weston's IVs over the course of last night and this morning. 

He got another one...

Got his dose of Vancomycin, destroyed the vein.

Got the vascular access team in here, started another one...

Half-way into another dose of Vancomycin, destroyed the vein.

"We need to start another IV..."

I don't think so.

Over the course of a couple of hours and many, many phone calls...

Weston will be receiving another PICC line tomorrow, properly sedated.

Until then, he currently does not have an IV and will wait for the PICC tomorrow before they attempt again.

I seriously lost my mind and caused this poor surgical resident so much grief and stress. But, I can't stand by and watch Weston get stuck over and over and over and over again, when he clearly needs a PICC.

You would think I'd feel on top of the world right now, but I don't.

Confrontation is not a fun thing for me. 

It truly terrifies me to think of what happens to people who don't know that they can ask questions and that they have other options.

The jerks in Interventional Radiology are the ONLY people in this whole, progressive hospital that place PICC lines, and they refuse to do it today. So, we have been added on to the list tomorrow...who knows when it will happen.

But it WILL happen.
He was seriously woken up at 1:30 this morning for labs...
Sorry! I'm stopping.

Wanna see some cuteness??

He was sleeping like this!

Yea! Out of bed and playing.

Peek-a-boo!

 The shirts are in!!!
The sweetest Wishes for Weston supporter EVER!!

Weston 2.0 Update

TCH Day 24::Post Transplant Day 12  I think The Daddy got kicked out of bed last night...

Little Lady was very comfy and did not want to wake up...

He'll never admit to it, but Max is glad to be back in the company of his humans.

I guess we all had early mornings. 

Weston was finally moved to Intermediate Care at 5:45 this morning.

I don't think he got much sleep between mid-night and then...nor did I in the PICU waiting room.

But, we're here now and can relax in our spacious room. NOT!

The room is spacious, there is just no relaxing. Even though our best doctor bud, Dr. Frankenthal (<3) warned the docs up here that W had fast heart and respiratory rates, they still freaked out and wanted to put him back on oxygen and get chest xrays. Oh, and then there's that pesky low grade fever. 

Weston has been stuck THREE times today.

******WARNING: Venting to follow. Feel free to skip below.******

Yes, I understand that he needs to have these blood tests everyday. I am not stupid, I understand what you are needing to follow. 

Is it not cruel to stick an adult over and over again, daily?

Then why do it to a baby?

Don't tell me that putting another PICC is an unnecessary risk of infection, I've never worked in a clinical setting where a peripheral IV (which he now has 2) wasn't changed at least every 72 hours. Are you going to tell me that THAT peripheral IV sitting there in that vein until it just stops working is not a risk of infection??? That same peripheral IV that doesn't get a weekly dressing change nor germ-killing biopatch, unlike a PICC??

And you guesstimate that we'll be here for another week, and you plan on sticking him at least once a day?

If the blood cultures you drew today are negative,

I WANT ANOTHER PICC!!!

And so help me God, if you tell me that he won't remember, I'll slap you upside the head.

Weston knows that pain follows the application of a tourniquet. He sees one and starts crying.

His brain is like a sponge, absorbing and learning his surroundings. Are you really going to tell me that this is not a learned reaction??

**************

I have discussed the possibility of another PICC with every team of doctors that has come through today, and have not received an answer. I will keep asking...

They've had to start him on some medicine to control his blood pressure (side effect from some of the other drugs); so, we're back on the EKG monitor. Bleh. But, it's two leads less, and he's only on intermittent IV drugs, so he's still portable. :-)

Dr. Fishman told me today, that once he's discharged, we will more than likely have to stay in Houston for 1-2 weeks.

I'd better run, Studly Muffin is trying to pull one of his IVs out...

Weston 2.0 Update

TCH Day 23::Post Transplant Day 11

Dr. Frankenthal, I just adore you. It's like you totally get me and where I'm coming from regarding Weston's care. We're like medical soul mates, or something!

This is how our convos have gone:
Me: "Weston is whining and inconsolable"
Doc:"He's withdrawing from the narcotics and sedation. Get this baby some methadone."
~problem solved

Me:"He's tolerates pedialyte just fine. Can he move on to something more substantial?"
Doc:"Absolutely! I want him to eat."
~are you for real?!

Me:"I almost lost my mind yesterday. Does he really need to be on the monitor (EKG)??"
Doc: "nope! And I don't think he needs to oxygen anymore, either. You need to be able to hold him."
Me:"Seriously...you are my favorite doctor. I think I love you."

He probably thinks I say that to all the doctors...Ha!

Anywho, we are officially downgraded to Intermediate Care; but we are now waiting on a room to open up.

Thanks to my doctor friend, I got a ton of cuddle time with Wes! Yea!

He's eating very well. No problems with appetite or keeping it down.

He is "comfortably tachypneic", meaning he's breathing fast, but doesn't seem to mind. I saw Dr. Goss (transplant surgeon) today and he said that babies transplanted this young have a tendency to develop rapid respiratory rates because their bodies need to grow into the new liver; and then their lungs can expand more fully. Nothing to fret over.

The one thing that I am super bummed about is the death of W's PICC line. They had to remove it last night because one port would not flush, and neither would draw back blood. He got stuck 3 times for 2 new IVs...not to mention that they'll have to stick him at least once a day for labs... Grrrrrrrrrrrr, the mommy is NOT happy.

But THIS does make happy:

Snuggly!!



And the recent Baby Boom makes me happy!!

Congrats to our friends Shanon & Daphne who welcomed their son, Riley, yesterday. And Congrats to Billy's cousin, Megan, who welcomed her son, Jaden, this afternoon! I <3 babies!! (and Dr. F!)

Weston 2.0 Update

TCH Day 23::Post Transplant Day 10
I finally lost it today...totally snapped in the ICU and crossed the boundary of nurse and patient's mother. Weston was screaming and I had been unable to pick him up because of all his EKG cords, nasal cannulas, blood pressure cuff, iv's... I have been at his bedside constantly, so I know that most of these thing are completely frivolous and there to "c.y.a." more than anything. His heart rate was stable; I disconnected the EKG. His blood pressure was fine; off with the cuff. Oxygen sat has been 100% for the past two days; ripped off the nasal cannula. IV fluids that had been stopped hours ago, but were for some reason still attached; disconnected. I picked Weston up and walked out the unit...

Or at least that's the way it went in my head. :-/
Today was super frustrating for me. Weston is in that odd phase where he is well enough to be out of PICU, but still needing closer monitoring than the floor can provide. We were supposed to go to the step down unit today, but they held us back because of his continued rapid breathing and he was, once again, positive for fluid. His nurse and I have had a silent hostile war brewing. Too much to go into, but suffusive to say, we won't miss her. And, I'm sure she feels the same.
I have a few ideas I'd like to pitch to the doctors; maybe it will give us a little more freedom and delay our departure AMA a couple of days...

**deep breath**searching for my inner Zen**

On a more positive note, Wes has had 4, 3 oz bottles and loved every drop of them. Yea! So long TPN/Lipids...you waaaaay overstayed your welcome. Hopefully tomorrow, we can get his final continuous drip converted to oral medication and actually have him free of IVs for most of the day...


Toys!!!






Spooning with Scout






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Weston 2.0 Update

TCH Day 22::Post Transplant Day 9

What a busy day!
Sadly, I had to say good-bye to the daddy and this sweet love:



And then, I had to change hotels for the 3rd time.
This one is right across from the hospital, so I can walk. BUT, it's expensive, old and super creepy.



And the toilet flushes by itself...and no, its not automatic. I guess you are paying extra for the supernatural entertainment?

Hopefully, this will be my one and only night here in the Bates Motel. Weston had a really good day and I think the chances are good that we can move out of PICU.

He was started on methadone and it has really helped keep him calm. Poor little guy whimpered for 6 hours non-stop yesterday. It absolutely broke my heart. They came to the conclusion that he must be going through withdrawals, even though he did not have all the classic signs and symptoms. The PICU doctor noted that he must be having a better day, because I was seated and not hovering.

We got rid of this irritating piece of...


Seriously...poor baby. I can't imagine how he didn't go absolutely bonkers with that on his little face. He spent 6 hours on a regular nasal cannula and NEVER dropped his 02 sats below 98%. this evening they put him back on the high flow nasal cannula as a precaution. Truth be told, I don't think he really needs oxygen at all. But, they are just covering the bases because he still is breathing rather fast, still.

I saved the best for last...I finagled a couple of feedings!! Go mommy!! He sucked down an ounce of plain pedialyte (which tastes like diluted salt water) early in the afternoon; and 3 ounces of milk/formula this evening. {he was really only supposed to have two, but I snuck another in...didn't want to waste}. And, as a result of getting something good in his tummy:



YES, under that tape is a sweet smile!!! I cried!!! It was so overwhelming to see Weston's wonderful smile and hear his laugh!!!! Pure mommy bliss <3 <3

I better enjoy my time alone {aside from the toilet ghost} and savor an uninterrupted night's sleep...it very well could be my last without my Wessy!! :-D


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