by Today’s been a good day for Mr AJ. The big “issue” we have is that he needs to start peeing more. His diuretics were started up, but he’s still retaining a lot of fluid.
Other than that, he came down off all of his meds except the ones he was on pre-op and a bit of milrinone that will likely be coming off overnight. He has morphine and Tylenol as needed for pain as well. His vent is back on his normal overnight cpap settings that he was on overnight with the exception of 5% of NO that will likely come off overnight too – as long as he’s able to get some fluids moving to make it easier to breathe.
In short – he’s rocking his medication and vent weans.
His feeds will be at full capacity here soon as well.
We should know by morning if we are going to be facing chylothorax issues again that will require a longer stay in Philadelphia and an extended chest tube drain or if that tube can come out shortly.
We’ve had a lot of questions about what’s next. Truth be told we don’t know. We could be back in iowa far sooner than expected, or it could still take ages. We really don’t know yet. Once we get back to iowa, we are still at the mercy of home nursing shortages before we can go home. With the trach, AJ will need round the clock supervision and nursing is pretty much required for us to be able to sleep at night. And we now also know that he will have his trach until he has surgery to fix his subglottic stenosis. So in summation – after this we will work on getting closer to home and continue to work on getting all of us under one roof. Really though – that’s secondary to the fact that we’ve come this far and defied the odds that were handed to us… We will continue to do whatever it takes to make sure this little guy has the life he’s fought so hard to have.
