'long time - no post'

Please do forgive our absence from blogworld - we've been again rather absorbed in our own little world. Since Samuel's come home, now over 2 weeks ago, we've found the G-J tube to be working. It is successfully keeping him from refluxing (and therefore aspirating) his feeds. However, he has still been refluxing a good bit - now it is just stomach acid. This leaves him in a good bit more discomfort than when it was gastric juices + formula. So, we are having to do a good bit of suctioning every day. (It is strangely funny/sad when your 4 yr old knows words like 'suctioning'.) We have increased the medication that he is on for reflux to the highest allowable dosage and he is still struggling with it and is quite uncomfortable several times a day because of it. He normally has 3-4, maybe 5-6 (depending on the day and who knows what else) episodes of reflux a day. These can last up to 45 minutes or so with him coughing, trying to keep his airway clear, suctioning, coughing, lots of crying and finally getting settled back down. Through it all, however, he is gaining weight and growing.

So, despite the G-J tube, the increased meds, a hypo-allergenic formula, sleeping on an incline, being on a continuous feed 20 hours a day, Samuel is still having significant reflux - which in and of itself would be a huge deal, other than a huge annoyance, save for the fact that we know is also likely aspirating some of that stuff. This really has left us with one option to control his reflux (and thereby hopefully curbing his aspirations) - the Nissen.

The Nissen is a stomach surgery that wraps the upper part of the stomach around the lower part of the esophagus to essentially act as a new (and improved!) esophageal sphincter. It is a permanent procedure. We met with the Pediatric Surgeon yesterday (Dr. Chandler) and we have gotten on his surgery schedule for next Wednesday morning (June 25th). The surgery does require general anesthesia (Samuel's 5th round of it) and should take about an hour and a half. Hopefully, we will be able to go back to feeding Samuel into his stomach, which means we should be able to drop the continuous feed deal and give him regular feeds every 3 hours or so. Not being tethered to his feeding pump will be a welcome change. As well, we should be able to drop the reflux medication over time. The surgeon thinks we will likely be in hospital for 3-4 days post-op, depending on how Samuel recovers.

We also have several other surgeries that need to take place in the next few months. We should be able to get his initial lip repair done within a month of his stomach surgery, if all goes well. Then we will have to figure out when to get done the several urinary surgeries that he requires. And before a year of age we will have his palate repair done.

So, lots going on. Some hard days and nights. But a faithful Father who consistently and constantly provides for us - often and most frequently, through his people.