Saturday, February 7, 2015

Back in the routine!

Ethan was discharged Wednesday afternoon after a good night on Tuesday. He was able to stay off his oxygen most of the night, dipping down to 90 occasionally at which point his nurse would go in and reposition him. Once he was awake, he was hanging solidly at 95 with no oxygen!  
The team came in and decided to cut him loose!  



So we bundled him up and masked him up so he wouldn't get any germies and left as soon as we could! 
He went back to school on Friday and did great, other than a nap on the bus on the way home.  Being back at school wore him out!

He's still doing well at home, and we have a follow up with his pediatrician on Monday. 

Thanks for all your prayers and good thoughts our way. This was a long admission for him at 2 weeks and a day, and an exhausting one.  

Hopefully it's our last one this year! 

Sunday, February 1, 2015

Holding steady


Ethan has been in a slowly improving, steady pattern for a couple of days now. Which we are fine with and the team is fine with. Our first year doc, Dr Jeff Lowe, is so awesome and totally gets Ethan and appreciates how fast he can change from ok to crapola, that he has no desire to push him. 

He has come down quite a bit off his oxygen- down as low as 0.12 liters. But he tends to work a little harder breathing so he's been very comfortable at 1/2 liter. 

He's tolerating full feeds, even with some additional water added. We are just spacing them an extra hour apart to make sure we don't overload him. 

He's slowed down from the other end a bit too-but did give the nurses two big surprises the other morning. So big they had to change his entire bed and bathe him each time. We don't call him stinky for nothing. The antibiotic is officially finished-you know-for the pneumonia he doesn't have. So that should help with the stooling. And we are keeping him on the twice daily lactobacillus for a while. 

He got his immunoglobulin infusion on Friday. Which meant vascular access came up with the med and supplies and I primed the pump and prepared it all, but they actually stuck him. Oh well, protocol is protocol I suppose. I'm just glad he got it! 

The IPPB treatments are really helping clear all the fluid out of his lungs and he sounds better and better each day. 

I attended the Asthma class on Friday, and learned a whole lot about the meds he's on and how they work and how long it takes them to work etc. We will have to work harder at keeping his asthma better controlled when we go home. Not that it was out of control, but we kind of lived in the Yellow Zone all the time and I'm gonna work towards keeping him in the Green Zone. My fellow asthma families will get it. It sucks. Especially with a kid that can't tell you he's sucking air. We have all got to be a little more observant with him. So I will be crazy for the next few months.   And they have told us that with his asthma under control and even if he gets no more viral illnesses, this is probably going to take a good month to get him over. 
With that said, we could very well be going home with some oxygen for nighttime and a bipap machine to do our own treatments at home. If that is the case, discharge won't be until Monday or Tuesday. Ahem. At least he will be better!

I'm working overnight tonight and Brian has to work at 5am so the staff is letting Big sissy Hailey spend the night with the bald kid. He's been a little fussy today because he's lonely when someone isn't there to entertain him so I'm very grateful they are letting her stay. 
He was so happy to see her-she hadn't been down all week with school, volleyball and work. 
He was all smiles when she hopped in bed with him:



And then she tried to do some homework, and mr. 'It's all about me' decided the best way to divert her attention back to him was to pull his MicKey button out (feeding tube)

This is him, oh so happy with himself, waiting on the resident to put a new button in. Hailey can do it-but they won't let her. 


Then he decided to poop all over his bed. 
I will spare you that picture that Hailey sent me ;)

It seems now they are hunkered down for the night-Hailey with The Office and Ethan with his light up turtle. 







Gotta get back to work-will update tomorrow evening. 
Thanks for all the good thoughts and prayers. 
And thanks to the Mertz Family for the dinner!  Much appreciated, and delicious!