RT is still on a flow of 5LPM, 25ish percent oxygen,  I say ish because the knob isn’t all that accurate, HFNC (high flow nasal cannula) isn’t verry high tech.

RT had a good night, same nurse as yesterday.

It’s a relief to see he had a good night! 

PICU Dr. Stops by,  says she is going to let him have a day without changes.  She tried him on a flow of 4LPM for a bit but he was not a fan.

Sounds good to us,  we don’t want to go too quick and go backwards.

Cares go good, just pee,  gave him a suppository last night and got a poop.

He has been very stable,  more stable than intubated,  pretty much only desating when the nasal prongs pop out of his nose, obviously he still needs them.

He seems happier today,  we get some good smiles out of him. Mom is able to catch a few with the camera!

He still likes to grab for the the nasal canula.

Lunch.

Cares,  put him in his awesome Seahawks jersey.  There is a TV in our room so we put on the game. First time I’ve watched TV in about 120 days.

I hold RT through the whole game. Very good hold,  he gets angry with the nasal canula occassionaly but other than that awesome.

I ended up mosty staring at RT and not watching the TV first game watched with him though! Pretty cool him wearing a signed jersey and Watching the game.  Seahawks won!

Put him back.

Cares,  RT manages to yank out his ND feed tube… that’s not good.

Now they have to put one back down. And do another xray to confirm position.

We can’t feed him into his stomach because of the risk of reflux and aspiration…

RT gets pissed off with them trying to get it into the correct position, I try and help keep him calm.

X-ray comes.

They take an image.  Nope ND is kinked and still in the stomach.

They try again. Nope. 2nd xray

More angry.

Try again. Nope 3rd xray.

More angry.

Almost,  they will put him on his right side and let it work its way through,  hopefully. ..

No feeds for now.

He was on 25ish percent all day,  but turned up a single time! Not even with his angry he was at us while putting down the ND! Absolutely amazing work  little guy! He desat to 84 spo2 briefly but came up on his own.

Seems like he is ready to be where he is at! All the good growth he has been having is paying off!

You have come so very far!  It’s so great to see him more stable extubated than ever before.

IV line is still good,  fluids started back up.

Now ofcourse RT does not want to be on his right side. Angry boy.

Binky time.

Mom and I take turns holding his binky in, and eating dinner.

He calms down a bit.

Shift change.

Night nurse is the same one that he had the night before last.

She brings us a binky that is sewed onto a beany baby black bear.

It kind of can hold the binky infront of his mouth,  cool idea that they have!

He eventally calms down.

Sleepy time.

Time for us to try and get some rest for tomorrow.

Another good day!

It doesn’t matter if it’s the weekend or a weekday to us we are there every day all day. RT doesn’t get weekends from having to do so much work, so we don’t either.

A NICU respiratory therapist comes and checks on us, hears how good he is doing!

RT one tough dude! Keep it up buddy!