Making Progress & Surgery is Scheduled

We're making progress. Oliver's surgery for the placement of his G-Tube is scheduled for tomorrow as an add on case...so that likely means he'll go later in the day. The surgery is routinely done, and takes about an hour. The upper GI study they did yesterday showed no signs of reflux so the EGD test has been cancelled, and there is no need for a Nissen Fundiplication surgery. Woo-hoo! We are grateful that all he'll need is the straight forward G-Tube. While under anesthesia the urology team will go back and double check a few more things as well.

Today he should have another swallow study so we can make sure that his aspiration has not changed or gotten worse in the past two weeks (since it was originally done on 12-22). Our understanding is that we will be here until at least Sat/Sunday to make sure he tolerates the feedings (and also so we know what we are doing!) We also have to do a decent amount of discharge planning to insure that we have the right supplies and care in place once we get home.

Last night and tonight nurse John takes the overnight shift so we can get rest. We think he is basically the most perfect human we have ever met, and sincerely feel like God placed him in our life as a gift. Very few things can make me cry at the drop of a hat, but just mention John's graduation from UNCW in May and I'll get all misty. We are SO grateful for him.

Yesterday we met with the Children's Supportive Care Team, which seems like perhaps the best thing to happen thus far. We felt understood (for perhaps the first time) by someone who gets the complexity of what lies ahead of us. We have difficult decisions to make about quality of life, symptom management, and conflicting advice from all the specialists that are involved. As a group, they will streamline, simplify, and follow us after discharge. So if we have an issue in Wilmington, we'll call them and they will work with our primary care doctor to keep us out of the hospital (if possible). They deal with kids like Oliver every day, and they understand the challenges. They have some great tools for thinking through the ways to make his life as healthy, joyful, and normal as possible.

We are feeling a little less overwhelmed about the transition home, which could change once we get to the realities of the g-tube... We are thrilled to have an interdisciplinary team follow us, and happy to escape unnecessary procedures and (finally!) have a g-tube surgery date.

Yesterday and today we'll mostly be hanging out in the room and hoping the sun will shine. We are beginning to feel like vampires. We've had some visits from friends, and I have gotten to do a bit of work. The countdown is on for our return home!