Keeping everyone on their toes...

Ethan is pulling his typical 'I don't follow any textbook' routine. 

He got to the floor yesterday afternoon and did so well!  He got a couple of feeds, stayed at 94-96 on 1/2 liter of oxygen, and slept soundly. Then, his witching hour, 7pm, was upon us and he dropped his sats to low 80's and had to be bumped up to 4 1/2 liters to even keep him at 92. His feet got puffy and his skin got mottled again. He also tried to throw up his last feed. Fortunately the resident that came up had some common sense and was wiling to give him an additional dose of Lasix and let us hold his feed off for another couple hours. 

He lost his IV the other day, so we needed to try and get some nutrition in him, but he's walking such a fine line between that and being fluid overloaded.  And some of his electrolytes were getting a little out of whack, so he really needed some formula.  As a compromise to sticking him, we added some free water to his formula feed and just slowed the rate way down. He did ok overnight, but they never were able to wean his oxygen level down much so he's at 3 liters. 

They got a chest X-ray this morning, which is still pretty full of interstitial edema, some patchy infiltrates and a pleural effusion.  This is today's film:

And this is last week's film:

Not a great pic with the glare, but you can see how much more washed out today's film is. That and the flat angle on his left. (My X-ray peeps will understand that!). It leads you to believe he's holding  some fluid, as it should be really pointy like on the film below. 

So, the plan for today is to start the IPPB treatments back up-4 times a day. Try to wean his oxygen down as he can tolerate but not make his work of breathing any worse, so if we have to stay at 3 liters then we do. 

They also want us to go to the Asthma Class tomorrow, as this RSV can continue to cause him some longer term respiratory issues and they want us to be very familiar with his asthma action plan. 

Dr Mann is the attending on this week and weekend, and we think he's fabulous and trust his instincts with the bald kid. But it looks like we won't be going home before next week.  And even then, he may need some supplemental oxygen. 

Slow and steady. 

Slow. And. Steady.