Screeching Halt

Sorry for the delay in updates. I had the chance to go to bed early last night, and I jumped at the chance.

So, Weston did great during the procedure. He got one unit of blood intra-op and has kept up his hemaglobin since then. The doctor said she actually saw the contrast dye leaking from the veins into the intestine. A first for her. Yay. Another unique charm.

Evidently he spiked a "fever" overnight and they jumped on it, doing blood cultures and heavy duty antibiotics. Vancomycin. Damn you, vanc. How many times are we going to do this. Of course, he doesn't have a PICC line because despite my advocating for one, its too "risky" for a short stay. Well, 6 days and counting in the hospital is not what I call a short stay. I digress.
The vanc destroyed his IV and he had to get another one plus a blood draw from his foot bc all his veins in his arms are shot. Go figure.

So, because of this temperature spike, he may not be able to go home tomorrow evening as we all hoped. Ugh. Always something.

He got downgraded back to the liver floor this afternoon. He was sleep and cranky most of the day but perked up enough for a Dino rawr.






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Power of Scrub Pants

You see these pants? They're magic. It just so happened that I packed them as a last resort because I was grasping at straws finding clean clothes for this adventure. Busy weekend, no clean laundry but clean work clothes kind of situation.
But, I am glad I did. These are universal "surgery" color for hospitals. Other than being really comfortable, they have had the added bonus of giving the silent message to some people, say taking care of my son that normally wouldn't be so helpful, that "I am one of you. Don't give me that lay person song and dance." All without me having to say a word.
Magic pants.
My pants broke down a HUGE barrier with an Ice Queen Receptionist that we've had not so good interactions with in the past. Today, she let me right back to the recovery room to question nurses face to face about where my son was, why its been 5 hours and I haven't been updated. >:-(
Aaaaaand just got another update as I'm typing this. **Magic Pants**

Anyway. They took Weston at 0830 and told me it was going to be approximately 6 hours. I went back to his room and took a nap...plagued with very vivid dreams that I was schizophrenic and was having a psychotic break. Lovely. Maybe it was that they were in real life torturing some kid down the hall, but GOOD. LORD. I can't escape the crazy even in my sleep.
I went outside for the first time since 3am Tuesday morning. And I ran into Ws liver doctor in my rambling. He had just been in the room with him and said everything was going well. The Radiologist found places that were bleeding and was still working at scarring those down. Now, as it was explained to me this is the problem: his portal vein (big, important vein) is occluded for some reason. As a result, his body has formed "collateral" veins to take the place of the portal vein. (Awesome! Way to go!) The location that they have sprung up in is the loop of bowel that was connected to the liver during the Kasai. (Boo! what were you thinking?!) Well, it's high pressure, even though its venous. And these collateral veins, aka varices, aka intestinal hemorrhoids (that one is mine) leak into the bowel thus causing the blood in the poop. This must have been happening for a while and at a much slower rate, bc we haven't seen it reflected in his poop and his hemaglobin has been slowly trending down for some time. We had attributed the low HGB to eating paper as an infant, dirt, outside pizza and sustaining life on milk.
Once they scar this set of collaterals down, new ones will form. THAT'S OK! Ideally, they will form somewhere else other than the intestinal loop and problem solved. Alas, the intestine is a very attractive and sexy place for these varices to form, so there is a chance that they will form in the intestine again and somewhere down the line, he'll have to have intervention again. Which in Weston speak, means "I'll be baaaaack."

So, for now, me and my magic pants wait.

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Book Deal

Yes, we are searching for a book deal featuring Weston and his rare, weird liver crap. Oy!

MRV showed varices (think varicose veins) at the site where his surgeon made the roux-en-y bowel loop during his Kasai 3 years ago! Also, another large vein is partially occluded or narrowed. Of course, this is rare. Like 3 kids a year. Shall we take a walk down rarity lane?? BA-1 in 18,000 live births; B+ blood type- ~8% of the population; undiagnosed bile duct obliterating illness- him and like one other kid; obscure GI bleeding at RY Loop site- 1 in 3 kids per year.
All I'm saying is he better be conversely lucky as he is unlucky. Lottery winner...professional athlete/dinosaur impersonator/Thomas the Train watcher.

Sooooo, tomorrow he will go to Interventional Radiology and they will scar those varices down which will keep them from bleeding (like some varicose vein surgery) and maybe see if they can open up that narrow vein.

I am happy to report that he has been holding his hemaglobin at 10 (Darn near low-normal) for 24 hours. Woohoo!
AND guess who got to eat real food?!



Yay, Bubby!! First time since MONDAY at noon. Hospital food probably never tasted so good.

On the home front, Ms. Lisa has been a God-sent helping us with Emmy. She got her dressed and ready to go for MEET THE TEACHER NIGHT!!!!



How precious is she?!
Her Kinder teacher is Mrs. S! So exciting!

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NPO Again (to the tune of "On The Road Again"

W received another unit of blood last night after we got transferred to the liver floor. We also started a bowel prep at 11pm... I swear, sometimes I think I am part of a psychology experiment and they throw things at me to see how I will react. "Will she set the room on fire this time?! Lets see!!" 😒

Praise The Lord, he drank enough of it to avoid a NG Tube. I told the resident that if they put it down, be prepared to restrain him bc it's coming out. She looked at me like she wasn't expecting that. HE'S THREE! Alas, dodged that bullet.

He had an EGD and a colonoscopy...no signs of bleeding. *sigh*
So, tomorrow he's going for a MRV. Like a MRI but looking at the venous system around the liver.

While I was waiting to go back to see him in Recovery, a family was getting the news about their baby's BA procedure. Ugh. Flashbacks. I can't imagine the agony of having to go through that again. Prayers of strength for them and the journey that lays ahead.




Trying to smile. Eyes puffy after crying from yet another IV start.


Waiting to go back.

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"I Love the Smell of Melena in the Morning"

Well, that's what one hardcore nurse I use to work with would say. To each their own, I guess. Btw, melena is black, tarry STINKY poop that has digested blood in it. Yay.
Why am I sharing this? Well, Weston starting having melena poops Friday night. Fast forward to Monday, his hemaglobin (already low) dropped 2 pts and he was pale and not feeling well. He was admitted to the IMC at Dell Children's where he received a blood transfusion and we were shipped to Houston via ambulance at midnight. 3 hours in the back of an ambulance. Put that on the list if thing to never experience again.



Today, was pretty low key. He had another ultrasound looking at his liver and its vessels. And we got downgraded to the regular liver floor. But, as a parting gift, he had another large bloody poop before moving rooms. The GI resident just came in and told me that he has to have a bowel prep (miralax) for an EGD and colonoscopy tomorrow afternoon. X( poor bubby.



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Location:Pressler St,Houston,United States

Lots of Sharp Objects

What a week.
Daddy and Weston went to Houston Sunday night for his summer check-up and follow-up biopsy.
That night they lived like bachelors in the hotel.

Since moving back, his liver panel has started to trend down. YAY!
Not sure why all of a sudden, but we are not questioning!

As much as 33% in the case of his GGT!
The biopsy showed no inflammation (!!!); no scarring (!!!); no bile ducts (???)
At least in that sample.
Because his labs are improving and his bili isn't elevated, hes got to have ducts somewhere. Needless to say, they weren't too upset about it and sent them home Tuesday night.
While waiting for results, he hung out with an "astronaut", stole a police car and chucked two cans of Sprite at the recovery room nurses. :-o

Annnnnd just because we're home doesn't mean that we're done with doctors and needles.
This afternoon, we had a DOUBLE kid check-up with back to school vaccinations.

Weston got 3, Emmy got 2.
o_O

We got some stats:
At 3 years old, Wes is 3' tall and 36lbs.

75th and 80th percentiles, respectively.
His pediatrician was very impressed at his growth and development for being a transplant munchkin!
At 5 years old, Emmy is 3'9" tall and 43.4lbs (50th%)
She'd be in the 95th percentile for height...if she were 6+.
Tall, tall girlie.
I'm going to have to cut this short, because I was just informed that she did her make-up for her wedding happening in two minutes.

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