by The last day or so has been pretty uneventful, which is the way we like it. AJ’s stats have stayed stable for the most part – it’s a balancing act to keep him sedated enough that he’s not taking in too much oxygen for his heart, and awake enough that his blood pressure isn’t dropping too low. I’m thankful that the nurses and dr’s here know what they’re doing while juggling all the meds.
The majority of our excitement has been around his various ports/lines. They got the picc line in the other day and had a low blood pressure incident that he was thankfully able to recover from. But they’ve had a hard time finding places to poke him and keep blood moving – the lines keep coagulating if they’re not flushed frequently, etc. He looks a little like a pin cushion, but we currently have enough lines in him that they’re able to give him all the medications he needs and one extra in case of emergency (his picc line in his leg that can handle all of his meds, one line in his hand that they use for incompatible meds that can’t be mixed with whats in his picc line, and an arterial line in his foot for pulling labs.)
The good news today is that we received word that this little guy’s first flight is scheduled for Sunday. We’ll have more info on the times tomorrow. Once we get to CHOP they’ll want to re-evaluate him from the beginning and will have to confirm that he is a candidate for surgery, but the hurdle of getting insurance to approve the travel and getting it set up is almost crossed! I should be able to fly with him on the plane, Aaron will be driving my car over.
So for today they’re simply working on keeping him stable, and tomorrow they’ll switch out his volume based ventilator for a pressure based one so that he has at least 24 hours of experience on the new ventilator before take off.
Definitely all good news, and all worth celebrating! But definitely something that should be followed with a lot of prayers because the flight to PA should be the ‘easy’ part by comparison to the surgeries our little guy needs.
So please keep the happy thoughts and prayers flowing for the long road ahead, and a big giant thank you to everyone who has supported us, prayed for us, etc. We continue to be blown away by the support!
