After a short ICU stay last week with Rhinovirus, we were excited to *finally* be home together. That lasted all of 3 days, and before we knew it we were back in the ER when John was really struggling to breathe. He’s now readmitted with bilateral aspiration pneumonia. 

He is 6 weeks old tomorrow, and just had his 3rd surgery on his nose. The procedure itself went very well and he is able to get some great rest now that he can breathe. Although it’s great that the procedure was a success- the problem is that it won’t remain that way and this is 100% a recurring problem. 
Due to his nasal deformity, the part of his nose that was just opened up will begin to close again in just a matter of days… our issue now becomes figuring out how to keep it open enough so he can breathe, and supporting him nutrition wise so he can grow- which is the only true fix for his condition. 

With each procedure, we are given much more clarity on what his life will actually look like moving forward. This is absolutely not his last surgery, nor his last hospitalization. We’re likely looking at many more dilations, maybe as often as every other week. Any illness for him will almost definitely result in another hospitalization. The management for this condition, as severe as John’s is, is extremely difficult, costly, and complicated. 

The silver lining, because I’m a firm believer in always finding one, is that he WILL eventually grow big enough that these issues will be in our rearview.. it is going to be an extremely rocky, busy, stressful 6-8 months. As the chief ENT doctor put it to us this morning….. 
“At least you know you’ll meet your deductible this year.” 

🫠🫠