November 20, 2017

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. 

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. 

RT one tough dude! Keep it up buddy!

November 19th 2016

Woke up early to be there for his 4th intubated CPAP trial.

Got to the PICU,   cpap trial starred about 10 minutes ago.

He’s doing good!

Sounds like he had a good night!

IV line installed.  Getting fluids, he has not been getting fed since about 0300. Due to the risk of regurgitation and aspiration when the ET tube is pulled. The Dr. has seen it cause babies to pass away…. obviously better to let him be hungrier for several hours!
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