Post Op (Part 3)

Joey was finally closed up yesterday! Wahoo!!!

Certain parts of his intestines were a little flared up, so they did some minimal stitching within there to keep things healing well. He has pooped since the surgery, which is a good sign things are doing well there (who would have thought we'd be so excited about poop...).

It was also decided to add a small piece of mesh to bridge the gap of his abdomen wall to avoid the cramming and potential blockage of veins/vessels, which most likely would have occurred if they had just sewn the abdomen wall back together. We have been told the mesh shouldn't impact his physical development (thank goodness, he loves rolling over and really wants to sit!). However, the surgeon told us that he'll likely need a hernia repair surgery in a few years. At that time they'll likely remove the current mesh, stitch his abdomen wall back together, and then reinforce everything with a new piece of mesh. We were hoping to avoid the mesh for this reason but he had to be closed up at some point, so mesh and potential future surgeries it is!

They re-intubated Joey for the surgery, but were able to extubate him pretty quickly after. He's back on the nasal cannula, with high-flow oxygen. He has been grunting and laboring quite a bit to breathe (again, likely due to pain and maybe some new pressure on his diaphragm), so this is really to keep him comfortable and minimize the stress on his body so he can get some rest and start to heal. They plan to wean him down on the oxygen throughout the week.

Between the pain and frequent interruptions, Joey didn't get much rest yesterday or last night. They have started him on a more robust pain management plan, and he seems to be resting a bit more today. He has been whimpering quite a bit, even in his sleep, which is heart wrenching. Chris and I are starting to feel extra helpless now. We are doing our best to comfort him, but both wish we could just take this pain from him somehow.

Joey hasn't been fed in a week (they have been providing him the nutrients he needs via IV) but today they may try "trickle feeding", where they will use a new NG tube to put some pedialyte directly into his stomach (his current NG tube is for suctioning out contents, not pushing them in necessarily). If he handles this well (i.e., no vomiting and normal bowel movements), they'll try some milk to see how he reacts to that. If everything continues to go well, once he is able to breathe a bit easier, he can try a bottle/nursing. It'll be nice to get him feeding normally again, hopefully in the next couple of days... lil' chubs has his rolls to maintain!

Today marks a week since his transplant surgery. We can't believe it has been a week already. We still have no concrete answers about the cause. However, in chatting with the transplant doctor, we were told that when they took a look at his liver, there were basically no cells left. I'm not entirely sure what that means but the doctor told us if he were an adult, he would have died with a liver in that condition. Babies truly are resilient, amazing little things.

We are so proud of Joe, he amazes us every day. We are constantly trying to emulate his strength and resilience, in hopes that we can help push him to continue this fight. But given what we have seen from him so far, he'd be kicking butt regardless. We look forward to seeing his smile again, and can't wait to snuggle him up... hopefully soon!

All our love,

The Moschellas