I’ll start by saying: John is out of surgery, enjoyed himself an extra large bottle after being NPO for 14 hours, and is having a great nap. He is stable and on room air. The plan is for him to be discharged tomorrow. 



The news we received today was an absolute shock. In no way did we think things were as bad as they are, and the long term prognosis for John in terms of his ability to breathe is, overall, pretty poor. 
For starters, the prolonged stents in his nose caused a large hole in his septum. This can’t really be repaired until many, many years down the road.
The amount of scar tissue that has regrown is substantial and because it’s mature, hardened tissue there’s not an effective way to “treat” it. Trying to cut it out would only cause it to regrow, and likely in a more aggressive manner. 
His once deviated septum is now more deviated, and has deviated so far and severely that it’s almost fused to the side of his nose on one side, further closing off his airway. The surgeon said she has never seen scar tissue form in this manner to this extent. This is no “course of treatment” for this and, at this point, a less is more approach is better for him. Any additional intervention will only increase scar tissue and further obstruct his ability to breathe. Unfortunately, that same approach may leave him completely unable to breathe as well. 


A minimal amount of tissue was taken out of his right nostril today, and it is our hope that it does not regrow. Since most of the obstructive tissue is old, it is possible that nothing new grows and he’s able to continue growing enough that his airways get slightly larger with each pound and inch, leaving him able to maintain things on his own. However, given the issues we’ve had with recurrent tissue growth it seems rather unlikely that will be the case…. 
If the tissue continues to grow, or any new tissue grows to a point where it can’t be trimmed back or lessened with oral steroids, he will be left with an extremely small airway that is too small for him to rely on. In that case, we will be forced to proceed with a tracheostomy. This will not be a fix, but will be a new road on this lifelong adventure that will undoubtedly come with its own struggles. 

His anatomy is so malformed and damaged that it could take years before the growth is meaningful enough to support him to the point that he can be “normal”. For months we’ve believed that this was something he could outgrow in 6 months, or even a year, but as time passes that is seeming more and more unlikely. 

For the time being, John is breathing easily and able to drink his milk. The reality is, we don’t know if he will be able to maintain this, or for how long. If his breathing starts to decline again to where it did a few days ago, we will have to have a long- term feeding tube placed in his stomach to help support him. This would be an entirely different road, full of its own set of trials and barriers. 

We’ve asked for so much from our village since John was born, but at this point we truly feel helpless and the only thing we can do for John is wait, and pray. For the next few days/week, we will be on the edge of our seat to see how he does. It is exceptionally hard having a sick kid- overanalyzing every move they make, the constant fear of “what if”, and anxieties about the unknown future… 

Please pray for his scar tissue to NOT return, so that he can safely breathe and eat. Seems like a ridiculously simple ask, yet, this is our biggest request.