D is for Discharge

Where to even begin?!? By Wednesday afternoon, June woke up. Her eyes popped open, and she looked at me. Her surgery sites all looked good so they started priming through her J tube with milk. I'm the meantime, June got another PICC line for her to get medication and TPN (the supplemental food she was getting for the first 11 weeks). On Friday, they started increasing her feeds by three milliliters an hour every six hours, while decreasing her TPN. June came off TPN by Saturday and was back up to full feeds by Sunday evening.

Over the weekend, the surgeon on call talked about slowly pulling tubes a day at a time and then giving June 24 to 48 hours in between to see if any complications developed. On Monday, another surgeon rounding thought everything should be pulled if a dye study looked good. We met with June's primary surgeon prior to her being taken to her dye study and agreed to pulling tubes at a speed that was in between the two recommendations.
                                                

June's dye study looked fantastic. They pushed dye into her stomach through the g tube and didn't find any leaks. She did have quite a bit of reflux though. Since the study went well, they decided to clamp the nose tube to see if she could handle swallowing all of her saliva. She did okay throughout the night, with only three spit ups, but surgery thought the nose replogle might be causing her to make more secretions so they went ahead and pulled the tube out of her nose. At this point, they still need to pull her JP drain (which is minimizing fluid around the surgery sites) and clamp her G tube. They are also going to possibly try mouth feeds-more to see if it is possible for her and what/if we can work on at home.

Originally, it was discussed that June would be going home middle to end of next week; however, with her progress, surgery said she may be ready by the beginning of the week-if not by Friday. Yay!!! (And yikes!!) There is so much to do to get ready to bring June home it's overwhelming. We've been waiting for this day since she was born (I can say that and it's not an exaggeration:)), but to think that we won't have several trained professionals outside her bedroom door if something goes wrong is making me extremely nervous. Although we have had more than 110 days to prepare to bring her home, the laundry list just grew by 200%! I'm not sold that June will be ready by Friday, but believe it or not, the day is well within sight!