Cute PICC

Arms up after PICC placement
He can eat again, again!
Anthony couldn't eat before the PICC was placed.
He was NOT happy.
After he returned to his room though, first thing was baby food meat and applesauce, then meds, then fries. He's really happy now. :)

Not the best picture, but you can see Anthony's legs are free from IV's and from anything else for now!! The only thing on him right now is the PICC line and it's tubing.

Monday

Rounds~Probable discharge before the end of the week, maybe Wednesday!

I need to have training to do lovenox injections, to care for a PICC line, and to do IV antibiotics with a PICC (6 weeks of antibiotics).

Anthony is coloring, being nicely distracted from food for a few hours.

Cardiology came by, and said that A's previous echos were clear enough and he does not need the TEE (echo down the esophagus).

Eating again

Yesterday, the ban on food was lifted for Anthony.
He threw his chew toy, the Q, on the floor, and chugged his sippy cup first.

That was when everyone was visiting.

He was tired and fussing when they got ready to go back to Nana's.

He was ecstatic to have french fries again.

A fry in one hand, a crayon in the other...could anything be better?!

Oh wait, a BUNCH of crayons in his hands!

Anthony had the BIGGEST smile when I let him pick the crayons out of the box himself.

Telling me all about it, hand motions and all.

Everyone came to visit today again.

We had just been moved to a bigger room, because a child in isolation needed the private room we had been in.

The cancer floor is pretty empty (although you all would think it full), so even though we're in a big, triple room now, it's unlikely we'll get a roommate today or tomorrow...
It was really nice for the children to have more room to move around in.

Here are pictures of what they did while here.

Anthony wanted to hold Andy's hand while I fed him.

He was just so excited to have his daddy there.

You can see the BIG construction out of 2 of our room windows. (there are 3 windows in here)

Anthony was helping clean his face...then EATING the wipe...hmm.

If you look closely, you can see the Space Needle through this window.

It was raining and maybe a little foggy that direction, but it's there!

Wanting Daddy to eat his fingers.

McDonald's french fries in a McNugget container!

My family is on their way back home. :(

We had fun visiting with them. :)

Anthony loves them all, and so do I. <3

Anthony REALLY LOVES his McDonalds french fries.

Rounds--more of the same, Tuesday will be PICC line placement and TEE (trans-esophageal echo to look at his heart from a different angle. It sounds like if the infection is growing on the patch in Anthony's heart, they'd do a certain antibiotic for a long time, I think.

Thank you from the bottom of my heart to those who are praying, fasting, and thinking good thoughts for us today. I am truly humbled by all that has happened with us, but also by the outpouring of love and support.

Better today

Andy and Kelly got here late last night. Anthony was so sleepy, but made Andy hold him for a while. He was NOT happy when they left for Nana's.
Anthony in "his position" this morning, while still asleep. :) It continues to charm everyone.


Rounds~ More of the same...Anthony's belly is still tender. The attending doctor (senior doctor) is thinking he might have a clot in the liver area or the liver. SO, another ultrasound in just a bit. After the ultrasound, he should be allowed to eat, but will have to start with fluids first.

They are going to talk to Infectious Diseases Dept. today to make sure they are taking care of the infection correctly.

Anthony is happier today, and has been wanting me to hold him, a lot more than normal. His smile is lighting up everyone's day. And, he'll be even happier when Andy and the kids are here. :)

PICC line should be placed on Monday or Tuesday.

CT results

CT results from today

Anthony needed to be sedated for his CT scan today. It was of his chest, to look for more clots. The anesthesiologists were awesome, like they’ve all been throughout his life.

He has been happier and more social today. Not as social as normal, by a LONG shot, but not moaning all day and needing morphine to help him smile.

The doctor just explained Anthony’s scan results with me. The nodules we thought were clots full of infection in Anthony’s lungs no longer look like emboli. They look more like possible small collapsed lung areas, probably from his tummy being a little distended and pushing on those lungs. Him moving around will help to fix this. So this news is great!!

There was one area in the upper right lobe of the lungs (don’t ask me anything about anatomy, ‘cause I don’t know!) that has definite infection. This does not look fungal, but they are leaning a little more to that possibility now.

We’re staying on the antibiotics for now for bacterium, but are meeting with infectious specialists tomorrow to get their input, and maybe start an antifungal medication too.

The doctors are not concerned enough to do anything tonight, so that’s good. They are happy with the progress Anthony has made so far.

He might get to eat tomorrow!

And, about the kidney in his chest, that needs to be fixed, but not right away. Probably later this year.

Fun pictures in the midst of the yuck :)

Those of you who know Anthony, know him as a happy, charming, cutesy boy.
This week, he has been nothing of that.
He has defiantly shaken his head "no" for nearly everything, even his favorites.
He has learned what the lab needle looks like and screams when he sees it. :(
He is so so so hungry and thirsty.
We've taken to let him chew on anything he won't swallow (straws, temperature tubes, syringes, etc.).
He even tried to eat his crayons.
I do so hope this week and the coming weeks do not break his beautiful spirit and personality.
Somehow I don't think they will, but it's worrisome.
I don't like to show pictures of him when he's miserable.
Today, there have been a few golden moments of distraction from his maladies.

First is while he was helping with his EKG today.
LOOK at that smile!!!
He was finally lifted off of isolation status.
So, we went on a walk around the unit today.
The team had the idea that walks might distract him from his hunger.

Our wonderful friends, Stephanie and her family, sent up a bag FULL of goodies.
Anthony loves the big Toy Story coloring book and crayons.
Check out his smile in these. :)

He thought the stickers in the front were cool.

The pose that charms ALL staff who come in contact with Anthony.

He also loves the Toy Story 3 book.

Watching Toys Story 3, the tv is up high.

He was so miserable the other night, even while eating his french fries daintily.

Today's better update

Rounds~~today we'll have a CT scan done of A's chest to see if there are any more of those clots.

EKG will be done just to have a baseline of Anthony's heart function.

He'll have labs taken a couple times for different things, and the more dangerous antibiotic is being switched out to a more common, safer one.

Inflammation in his gut yesterday was pretty "mild" so we'll see if A is able to eat a little tomorrow and we might not need nutrition through the IV!!!!

We're out of isolation today, so I can distract Anthony with some walks around.

The team thinks it's amazing that I'm not freaking out, outwardly. I still keep trying to keep things in perspective. All of Anthony's issues right now are very fixable, so in the general scheme of things, I can't complain...too much. :)