Joey was successfully extubated on Friday! Along with his breathing tube, they also removed the central line in his neck (which was essentially used as a dialysis catheter for plasmapheresis prior to the transplant… we called them his antennas because they were two short tubes sticking out of his neck), an arterial line, and his NG tube. It was great seeing him with several less cords/tubes, and fully awake! I even got to hold him for a while! This was still a little awkward because of the wound vac in his stomach since he isn’t closed up yet, and all of the cords/tubes he does still have. But it was the first time I held him in about 3 days so none of that mattered to me, I was just grateful it could be done!

After extubation, a nasal cannula was placed to help administer oxygen to him. He is breathing quickly, likely due to pain, but from a respiratory standpoint he looks okay overall. This is was done to essentially to keep him comfortable and ensure he isn’t stressing his lungs prior to surgery tomorrow. The extra oxygen was making him a bit bloated, so his NG tube was added back in to keep his stomach small and empty, which will help ensure he can be closed up tomorrow. Joey really does not care for the NG tube, and has pulled it out all by himself on 4 separate occasions now. He has somehow mastered doing this within about 10 seconds, and times it perfectly when no one is looking. He also figured out how to do this once with mittens on both of his hands, which has all of us stumped (and slightly impressed) by his houdini-like tactics. Each time he pulls the NG tube out, the X-ray team needs to come and make sure it is repositioned properly. They are located in another building, and I’m pretty sure have become quite annoyed by us for having to trek to our room so frequently.

Overall, Joey is doing great. Not nearly as fussy as we had been warned, but noticeably in pain when his pain meds start to wear off. The doctors and nurses continue to work to keep him comfortable until tomorrow, with minimal stress on his little body. When he is comfortable, he has thoroughly enjoyed a crib aquarium from his auntie and a star projector from Ms. Jenny. He misses having access to his hands, but until the NG tube is removed, he can’t be trusted with them.

Chris and I are excited and hopeful that tomorrow he can finally be closed up, and we can start the recovery process to get him back home (hopefully in the next 2-3 weeks). When we have been home in the last couple of days, it feels so empty without Joey there, and his big brother Draco definitely misses him. We look forward to getting back to normal, even if that looks a bit different for us now.

We are still waiting on more definitive answers regarding the cause of this, but the leading theory continues to remain an overactive immune response to a virus, which presents very similarly to autoimmune hepatitis. However, we are still waiting on more comprehensive metabolic tests and genetic tests to see if we can glean any additional information.

Thank you again to those who have reached out, sent gifts to make Joey and us more comfortable in the hospital, sent delivery service gift cards so we don’t have to continue eating the hospital food, taken care of our fur babe, and kept us in their thoughts and prayers. This experience has made the shift from a sprint to a marathon, and your love and support continues to keep us strong and push us forward.

All our love,

The Moschellas