Ezra had the bronchial scope yesterday and it showed that he has severe inflammation of his larynx. The origin of this is unknown, but likely from a respiratory infection. I kick myself now (and feel EXTREMELY guilty) because of that cold he had for two weeks back in late March/early April that we shrugged off as a cold and never saw a specialist about. His ped did order a chest xray, which was normal, but of course, did not show any of his esophagus. I wish I had followed up with a pulmanologist and ENT sooner, but his breathing wasn't bad then and I felt like he was already seeing so many doctors (eyes, heart, neuro, geneticist, PCP). I feel like I neglected to do everything I could to make sure he recovered from that cold, which lasted several weeks. But I shrugged it off to him being a preemie and having a compromised immune system. That doesn't justify anything, and, in fact, should only have given me more motivation to investigate the cold further. Now, this could be lasting, permanent damage, as the ENT and pulmanologist are suggesting a trach at this point. We won't know anything about that for a few days. He will remain in the hospital until this larynx thing clears up.
Because of these findings, the neuro-surgeon has decided to postpone the shunt to an unknown time. He wants his breathing issue to be rectified first.
So that means Ezra will remain in the hospital indefinitely. When we are more clear on the direction the doctors want to take, we will update the blog. In the mean time, please pray for this inflammation to heal so that he can breathe on his own! NO TRACH!!! That is my biggest prayer at this time. Also, pray for insurance to be settled before the 31st so that there is no lapse. Otherwise, we are responsible for whatever is done after that date, until he gets new insurance. Obviously, we cannot afford that, as it could be many thousands of dollars.
Thank you all for your love and prayer and support!
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