John has had a fabulous week+, with the exception of a few hiccups. We’ve finally gotten his feeding regimen in a good spot and he has gained back the weight he lost. We are nearing the 11 pound mark!! 

He is headed back to surgery tomorrow at 2 pm. The surgeons aren’t exactly sure what they’ll be doing, as it depends on what they find once they get in there. The current plan is to hopefully address the left nostril that is closed back up with some sort of stent. It is our hope that the damage to his septum has had time to heal and won’t be an issue anymore. 

In an ideal world, the nearly 3 weeks of having a stent in the right side have really opened things up and that stent will be removed and finally give him a patent, normal-ish sized nasal airway. The week following the stent removal will be a “wait and see” how his body reacts. 

At this point, he hasn’t taken a bottle in 3 weeks. His breathing is in an okay spot but with surgery coming up we didn’t want to rock the boat and risk an aspiration event. This journey seems like it’s far from over, so we’ve begun preliminary discussion on moving his feeding access to his stomach, to allow his nose to heal and be more open. This decision is a big one, an unfortunately both options have pros and cons. It will be helpful to hear what they see in the OR tomorrow to help guide this decision. 

We’ve been extremely encouraged by what we’ve seen out of John this week. He’s been allowed time out of his humidity box and has enjoyed real baths, play time on the floor, and is extremely alert and interactive. This is so encouraging to see since there was a time that his development was an unknown variable. There’s still some unknowns regarding his intellectual development and possible learning disabilities, but as far as we can tell (as of today), he’s the most normal little boy with a tiny nose and a special front tooth. 

We will update everyone once surgery is over tomorrow evening.
Thank you all for the prayers and love. We feel them daily. 🩵