After today, it looks like we will have to institute some sort of discipline system for Mr. Parker. He has, um, sort of a *minor* temper problem.
Turns out that he spent his morning throwing such a fit of baby rage that he shorted out his ECMO machine. Mmmmhmmm.
He threw two more fits while Mike and I were visiting.
These fits are a mixed bag-- on one hand it is delightful that he is strong and fighting and aware enough of his surroundings to know that something is afoot. On the other hand, he's in a rather precarious situation already and doesn't need to be exacerbating it by thrashing about and trying to cry, in the process getting his blood pressure and his oxygens sats all out of whack.
Suggestions for a reinforcement system for a 4 day old? His penmanship skills are lacking, so I can't make him write "I will not short out my ECMO machine with my buffoonery" 100 times. His bed is already in the corner, so that's out. Sigh.
His doctors and nurses have determined that, due to his inability to calm himself down just now, the only course of action is an extra shot of morphine and Ativan. His fit this morning was so bad that they had to put him back on his paralytic for a while. Drama. Angst.
What is likely happening is that his regularly scheduled medicine dosages need to be adjusted. It might be that he metabolizes medicine faster than some other babies, which is supported by the amount of urine he's outputting. Naturally, if his meds start to wear off, he's going to be unhappy. I can't blame the guy! Dr. Williams upped his doses today, and he has remained quiet and restful since then.
In other news, his dopamine is down from 16 to 10. This is the medicine they are using to try to regulate his blood pressure, and if it can go away completely, that would be super. As of right now, his ECMO setting is at a .28, and the goal is a .20. I got a better explanation today, so instead of elves living in the machine I can actually explain what that means:
When we arrived today, his ECMO setting was at .33. This basically is the speed at which things are moving through the machine (I THINK it is liters per minute). As his lungs get stronger and are able to contribute more oxygen to the mix, they can decrease the speed with which the machine is circulating blood and contributing oxygen. The lowest you can go on an ECMO machine and have it still functioning is .200. If you can tolerate a .200 setting for an extended period of time, it's likely that you are ready to come off and try to be supported by the ventilator instead. This is our goal, naturally.
At 2 o'clock this afternoon, he was at a .33, and as of right now he's at a .28 and holding steady. He went down .05 in just a few hours, and he's only got .08 more to go. Obviously, they do this at an excruciatingly slow (to us parents) rate and give Parker lots of chances to prove that he's either okay with the new number or needs to go back up. He did go back up for a while after his fit today-- so we are hopeful that upping his meds will prevent such fits and therefore prevent anymore uppages on the ECMO dial. Dr.Williams is going to give him the rest of this week to get down to that .200 and get rid of the dopamine. If he can do both of those things, he will be cleared for takeoff for Phase 2 of his CDH fight-- focusing on repair surgery and growing some good lungs.
It's wretched to see him pitch a fit. It looks, on the outside, just like any other angry baby-- red face, squinched up fists, blotchy skin, kicking legs. If you put a normal angry baby on mute, you'd have Parker. He's doing everything the same, just no noise is coming out. It's heartbreaking. He's uncomfortable, and I can't pick him up and snuggle him and make it go away. The only thing that can be done is to drug him into submission. They also have told us that he's sensitive to touch and prefers to be left alone. These two things together might possibly conjure up visions of a stoned-out baby, left languishing on his bed alone in the corner. I can assure you that is NOT the case.
His nurses take such good care of him. While I hate that he's in critical care, I love that he has one nurse assigned just to him, and for right now also has an ECMO specialist assigned just to him, each shift. It makes it much easier to come home at night knowing that he's never ever by himself. We, of course, are jealous of those who spend more time with our baby than we do. We watched a diaper change today, and Mike commented that the nursing staff has changed more diapers than he has. It's hard to know that I can't comfort my baby, but a nurse with a syringe of medicine can.
Still, we have to look at it like we did ECMO-- if that is what has to happen for him to survive, that is what will happen, without a doubt. Plenty of time for dirty diapers and screaming fits later!!
In the meantime, I kept watching poor baby P-nut struggle today, and I kept telling him to just relax and calm down. Into my head popped my verse for today- which I think all of us could benefit from right about now...
"The Lord will fight for you, you need only be still."