by We may have spent almost a week inpatient, but he’s still full of new tricks, the latest being making his rocking horse go! His sign language vocabulary is growing like crazy too. His new favorite words are “go” and “book”.
We came home from the hospital a couple of days ago still on 4-6, sometimes 8 liters of oxygen, but knowing it was viral and something we decided we could battle at home. Yesterday he was consistently at 4, today we got him down to 3 and I’m hopeful that by the end of the day tomorrow we will be back at his normal 1.5 liters.
Yesterday we went back to the hospital and met with GI, and have decided to push forward on his blended diet. So last night I cooked up some chicken and vegetables in the crock pot overnight. Today they were blended like crazy and he has now managed 12 hours without any formula and we are currently pushing to see what we can manage overnight.
Our hope is that we can focus on following a specific diet that helps manage reflux. That’s one of the key things they will be looking at when we go out to CHOP, so we want to do what we can to prevent having our next recommendation being a surgical one that’s not directly an airway repair. (Ex: needing a GJ tube placed so his feeds go straight to the small intestine instead of the stomach and reducing the amount of reflux he has).
Speaking of CHOP… we finally have some tentative dates for our trip out East! Mid October! We’ve scheduled the pickup of a portable concentrator and started to look at driving plans. Lots of planning and prep needs done between now and then and less than a month now to do it.
