What a day.

I am about as emotionally drained as I am physically drained. 

And my poor, sweet boy is the one going through all this. 

At this point, all the issues he's having are purely the nasty side effects of RSV.  My concern about his BNP possibly pointing to heart failure were put to ease today when Dr Carlson with Cardiology came by. His echo looks as great as his last one in August. Mild leakage of his Melody Valve-which is new, but no problem. Otherwise right heart function is fantastic. The BNP  drawn on Tuesday that is 388 is not the same BNP test that was done in May 2013 when it was 422 and he was in failure. The 422, and all the others before that were 'send out labs' that went to Truman to be ran called a BNP.   The test done on Ethan's blood Tuesday is a NEW test that Mercy has decided will be their new standard for measuring heart failure. It's called the NT-proBNP and is done in-house. And it's ranges are different. Way different. As Dr Carlson explained; the 388 from the NT-proBNP is like the 38 Ethan had when not in failure a few years ago. A typical number of a kid in failure would be in the tens of thousands with this test-so his 422 would equate to about 40,000.  Clear as mud right?  Like comparing apples to oranges. And if the jackhole resident who argued with me about Lasix last night would have just explained that, I wouldn't have had to get all crazy heart mom on everybody. 

I finally left to go home Weds night about 2:30am because I had an appointment at KU at 9am on Thursday. My sister Kate went to stay with Ethan this morning until I could get there. Well, I never made it to KU, he started going downhill first thing this morning. Fever spiked, heart rate went up, sats went down.  Team ordered another chest X-ray-unchanged from previous and decided to stop all fluids going in-IV and feeds. They also decided to start him on some IPPB-or Intermittent Positive Pressure Breathing. It's like C-Pap for kids. It is used to forcefully push air into the smallest air spaces in the lungs in the hopes of popping them open-whereas the RSV causes them to be really closed off. He was to do 20 min every 4 hours. He did well with the first set, then rested nicely and actually we both napped for a few hours.  Then he did his second 20 min, and did ok through most of it. Got a little fussy at the end. 

At about 5pm all craziness broke loose. Ethan spiked a temp of 100. (He only runs about 96.4 because of his immune deficiency-so 100 is like 104 to us). And he got a little mottled in his feet and hands and had an increased work of breathing that was visible in his abdomen and neck area. Team came up to see him within minutes and decided to give Tylenol, start some fluids to combat the temp and try some nasal suctioning.  Team left. Within 15 minutes Ethan began retching like he was going to throw up, temp spiked even higher to 103 and his sats wouldn't come over 83 on 15 liters of oxygen by non re-breather face mask.  Nurse Jessica called the Team, called the Charge nurse, called Respiatory Therapy and shit got real. Real quick. Ethan became really lethargic and slow to respond, aside from being slow to recover with the increased oxygen. A decision was made to call the Rapid Response Team to get an attending Dr and ICU nurses present. Shit got even more real.  

That is the most calm panic I have seen surround my boy in a long time. 

It kinda makes you weak in the knees as a parent. 

He was then put on bi-pap and moved to the PICU.  And here we are. 

Bi-pap is BiLevel Positive Airway Pressure-which is what CPAP is.  At 70% Ethan is being forcefully given 70% oxygen. The normal air we breathe-room air-is about 21%. So he needs that much more to keep his oxygen level at 90 or above.  They will try to wean down to 30% tonight, and if he can go down to 30% and keep his sats at 90, we will switch to a nasal cannula. Unfortunately Ethan has thrown up in his mask twice and we've only been able to get down to 61%. And without the bi pap at all, he just simply has no oxygen reserve left and his sats dropped to 73. 

We also got another chest X-ray, and this one now shows some right lower lobe funkiness consistent with RSV.  He had also had a few really stinky, loose stools so he is being checked for c-diff if we can get enough to send for culture.  

It has been one heck of a day, and Ethan once again has proved our age old motto about him;

"Ethan is fine. Until he's not."

Right now, he's not. 

Thanks for all the prayers and offers of help. He's in the best place he can be right now in the PICU, and like I always say "it's not what you know, it's WHO you know" and knowing three of the PICU nurses working  tonight got us the bombdiggity PICU suite complete with its very own bathroom and couch bed. Now to try and get some zzzzz's on that awesome thing!  Nevermind. Now he's throwing PVC's because it's just not gotten exciting enough for him yet.