I immediately began to tell him of our oxygen woes from last night. (It's already fixed!) And it won't be a problem any more. He will just keep him on 1/2 liter all the time (until we're past this immediate thing) and then up it if it's not enough at night. Within 2 minutes of being back on oxygen, his heart rate began to decline. They will eventually try to wean him but not for several days and they are not worried about sending him home on oxygen if they have to. (Most kids you have to be 02 free for 24 hours before they can discharge you... his rules are different due to the nature of his underlying condition and the fact that he has 02 at home already.)
He's feeling that this is some kind of bug somewhere in his body, an acute condition and not a sign of multiple system organ failure (which is what this could also be and everyone was thinking). They were thinking multiple system organ failure because his lungs aren't functioning, heart fatigue enzymes are way elevated, liver enzymes are very elevated showing distress, stomach has stopped working, etc. So basically every system was declining. So I point blank asked Dr. C. if this is acute or chronic and I knew he would tell me straight. He said it's possible it's organ failure, but his gut tells him "I don't think this is the end". That's a quote.
Meanwhile, his fever from this morning of 104.1 went down to 102.5 with tylenol. But 2 hours later, it's back to 104.4 so he authorized the use of Motrin as well. They were trying to avoid that due to the liver enzymes being elevated AND since he was supposed to have a scope on Monday. But the fever is a bigger problem at this point. He feels that once we get that under control, his heart will get under control too.
Speaking of heart, I still haven't heard from the Cardiologist but expect to see him this afternoon sometime with their assessment of what is going on cardio-wise.
And this venting system? Very cool. Milk comes out of his joey pump which is basically giving him a continuous feed a few drops at a time (think like the IV drip). And if there is extra air or extra fluids in his tummy, they will come back up this second tube. Immediately upon hooking it up, there was air and then milk coming up the tube. It basically fills every time milk goes in his tummy. His retching has almost entirely stopped since this got hooked up too. Between that and the oxygen going on, his heart rate has come down from 200 plus to 177. (Update: 4pm, his heart is is the 150s and steadily going down. Fever is staying around 101.5 now that we are alternating meds.)
2:pm Pulmonologist (on call guy, not the regular one I see) came and said all is still looking good. He is struggling with saturation levels because of the tie in with the gi issues he feels. He'd talked to the GI and now that his retching is under control and he is handling feeds, he will start to improve lung function. They are still waiting for the viral test panel to come in to see if they can find the exact strain. Also waiting for bacterial results just in case that's the deal. But as long as his GI issues are resolving, they feel his lung function is not permanent damage or decline. That's HUGE news.
3:15 pm Cardiologist just left. Finally some great news. His heart is anatomically correct, working and functioning properly just overly stressed. If we can get the gut under control, we can get the heart under control. Just FYI ... normal CMP values are under 5 for his age and his was 30. THAT is why they were so concerned and ordered the immediate cardio tests.
I don't know if the irony is hitting any of you but I cannot WAIT to make a report to the Ex-GI's office and let them know (very nicely and matter of fact), that it was indeed a GI issue. That this was the trigger to all of the decline.
His total CK is near 700 (Under 130 is normal). So it's showing general muscle fatigue. The cardiologist said this appears to be a general weakness/fatigue issue. He felt the next most appropriate step would be the muscle biopsy. It's what our neuro was going to order next, they just wanted a few other tests in first before they did that. I think we're to the point where we need to know though so I will talk to them on Monday.
5pm EKG lady showed up. I have no clue about what is normal looking and not. Clearly, I should have gone to medical school. But from what I DO know, it looked pretty unremarkable. But of course I'll wait for the professional to interpret it for real. The Cardiologist said they would continue to monitor him while here until we are discharged just due to the really high CMP rate and the very high heart rate.
5:20 the Viral panel came back negative. So this is likely bacterial in some way. They just don't know the source. It's not bladder, ears or throat which are the most common sources and easiest to test for. It could be in lots of other places such as heart, GI tract, etc. Hopefully he won't spike any more and it won't matter where the source is really.
So ... for now, I think we're on the rise. As soon as we can get this fever and it's cause under control, we'll be considered stable. He's very happy and playing now that he is back on the oxygen. He perked right back up. (I took this picture soon after being back on oxygen ... I should have done the before/after picture to show what a difference that makes.)
Love that baby!
I'm so "held up" by the prayers, the comments, etc. I know that Manny is touching MANY peoples' lives. He is a joy spreader. People hear a little of his story and they are amazed by him and by God's ability to heal. So keep spreading his story. He was meant to be shared. :)