Lots of little changes today!
We saw pulmonology and she said the lung looked better via x-ray which is great. They weaned down the vent (maybe too much) and his nitric oxide which is great.
He opened his eyes just a slit a few times but didn’t look at us or anything, he is still very sedated.
He got some orthotics for his feet that have little kickstands to keep his knees facing the ceiling and keep his ankles flexed. They want to make sure he doesn’t get drop feet.
He got another echo today and the cardiologist said that his right ventricle looked NORMAL!!!! That was amazing to hear. It went from severe to moderate to mild to normal in 3-4 days. They were worried because of his lung injury, that impacts the right ventricle, so, good news, amazing news!
Although he has a heart defect, that has never been his issue. Both times he landed on ECMO for his lungs… for 2 totally vastly different reasons.
We were able to pull his catheter today which is nice! We will just weigh his diapers now but that is nice to get that out of him. We also got to pull his NG tube that was going in his nose, one less thing!
He has been running a low grade fever all day, nothing is culturing so they don’t know why but he has just been running warm all day. We will just keep an eye on it, always something.
He was gagging a lot more this afternoon. We don’t know if it is because we upped his feeds today and he hasn’t pooped or he is more wakeful so he is gagging on the tube more. Then after the little gagging episode, he had some work of breathing like he was gasping kind of and bobbing his head a bit. We suctioned a bunch and got a bunch and it would get better for a bit but then he would do it again. He just had a long episode of doing it so we got a chest x-ray here at 9pm and that looked normal.
The Dr. thought it could be the way they weaned his vent today, that he hasn’t pooped (did a suppository but so far, nothing), that his lungs are recruiting, more secretions, he is a little fluid positive and that he is more awake so he could be more agitated. It could be any number of those things or all of them together. It is hard to say but they aren’t overly concerned. We paused the feeding for a few hours to see if that helps, we will continue to suction and we went up a bit on the vent to give him a little break. He doesn’t seem like he is bothered by it but it looks really uncomfortable.
We also added in an albuterol every 4 hours and that should help loosen some stuff up.
There was an emergency in the unit about 9:40pm tonight. All the alarms went off and everyone started running. We saw nurses grabbing the code carts, gowning up. They wheeled everything over and nurses and doctors were running to the end of the hall. It is horrible. It is horrifying. Maxley is in a good place right now but it is a constant reminder that something could go wrong at anytime. Mom and I said a prayer for them and have been emotional. It is so unfair. This life is so unfair. I am sick to my stomach for that other family because I know too well what they are likely dealing with or maybe they don’t even know yet. It sucks. It all sucks.