There’s been a few minor complications but Zane has done so well and we were able to go home earlier than expected. 

Sunday, Zane was doing really well. They took out some chest wires, but left his drainage tube due to his output amount on Saturday. I was a bit frustrated by this because things had really slowed down and I felt like this was sowing down our progress. However, Sunday late afternoon they noticed the drainage was milky looking, or chylous. They tested it for tricglycerides to see if levels were above 150 and would need treated. His levels were at 530. This means something in his lymph system was nik’ed during surgery and was leaking. Since they caught it, they could treat it and cause no real worry. He’s on a low fat formula diet for the next 6 weeks and all should be good! I’m now so thankful they were cautious and left the chest tube in to be able to catch this. Otherwise, this would have built up in his body unaware and eventually they’d have to put a new chest tube in to take it all out. 

Monday, the drainage was already clearing up enough that they took out his chest tube and moved us to the step down unit. It was so fun going over there as that’s where we spent a lot of time this summer so we got a nice little swarm of our old nurse friends wanting to see how big Zane had gotten over the last 4 months.

Tuesday, my mom came up to visit and Zane napped a lot during Gigi snuggles since he hadn’t slept much Tuesday with all the excitement of moving. At this point the goal was for his oxygen to regulate. He’d been on and off nasal cannula since surgery. His saturation would look really good and they’d let him breathe in room air, and then all of the sudden saturation would sit in the 60s and they’d decide he needed a bit more help and would hook him back up. Even when he was hooked up, he was getting the oxygen hardly any of the time because Z hated it and would just push it out of his nose. I could only fix that so many times. Unfortunately It just takes a while for the body to get used to this new circulation, especially while they keep messing with him in the meantime. But they want it to be consistent enough that we’re sure nothing crazy will happen once we’re home.

Wednesday, the doctors decided to take him off of any oxygen and let him try to prove himself. Even if oxygen sat in the high 60s, we’d leave it and see how Zane reacted and recovered. He sat about as low as he was allowed without being hooked back up for a lot of the day. It was a pretty stressful day, as I just sat there watching numbers for 12 hours. Zane never seemed to be in distress but he really had all the nurses worried and checking on him constantly. We just wanted numerical proof that he was getting better and ready to go home. As we prepared for that possibility, he had an echo done and bloodwork drawn from him head. It was not a happy afternoon.

When I left for the night, we’d made it the whole day without being hooked back up, but I wasn’t sure if the numbers would be good enough for discharge to be approved. Thursday morning, I got there early to find he’d made it through the whole night on room air and sats had climbed to stay in the 70s. Dr Rodefeld came by before his days first surgery and said as long as I was comfortable, we were ok to go home. His oxygen still isn’t where we’d like for it to be, but it should just keep trending upward, and even when it’s so low Zane seems to be ok. Discharge then happened so quickly that we were just waiting for Nick to make the 2 hour drive back to Indy to pick us up.

Zane’s still not 100% for sure. He is so happy and more like himself everyday, but still has some times of not feeling the best.

Please keep praying for this little cutie that he heals well, oxygen saturation keeps getting better, this new formula fixes the chylous leak as it should, and his pain goes away. Surgery #3 should happen around us 2nd birthday and we’re hoping he’ll do so well that we can be pretty normal for the next 18 months. 

Pray for adjustment to this new normal. We have new med and food schedules to adjust to. We’re no longer being tracked daily by remote nurses and I’ve been told parents often struggle with that security blanket being taken away.

Pray that this surgery helps Zane’s ability to eat. We’ve seen good signs the past few days, and we’re hoping it just keeps getting better. It would be such a blessing if he started eating enough that we wouldn’t have to use his g-tube and it could come out sooner rather than later. Z hasn’t vomited quite as much this week as pre-surgery and we’re praying that stays as well!

And finally, we’re praying for miraculous healing of the leak of his tricuspid valve on the right side of his heart. In all discussions with doctors about how well Zane was doing this week, there was the disclaimer of “except that leak..”. It doesn’t cause immediate concern but is something they see as a long term. There wasn’t an immediate improvement after surgery but hopefully the stitch Dr Rodefeld put in, Zane’s new blood pressure meds, and the lower volume now being pushed through his heart will lessen the leak a little bit as Zane’s body regulates. Ultimately, we’d love some divine healing so we don’t need to worry about that on top of everything else in the future. 

Thank you all for all of your prayers. This past week was a bit draining and threw a few small curveballs, but overall Zane did truly amazing. We are so grateful.