While we had planned on an update today anyway, it was suppose to be all positive updates. Apparently Elias found out, must have overheard while wearing his BAHA (kidding of course). Last night shortly before midnight Elias decided to stop breathing again. He has been due for a series of episodes as we have been on a pattern of roughly every 4-6 weeks for quite awhile. He made it through the night with his oxygen saturations staying at safe levels, but lower than normal –even for these episodes but he let the ventilator do 98% of his breathing for him. No oxygen had to be used so that is another positive. We have already contacted pulmonary this morning to see if they want to do anything. Waiting on a return phone call. The stress of it, while high & intense is manageable –from experience maybe, but the frustration level increases every time. We just wish we could figure this out so we can prevent them.
Ironically, one of the items we were planning to update was the latest MRI results from Wednesday’s scan. This was a follow-up scan from one Elias! had in October. The primary objective of the scan in October was to try to identify any components to support the central apnea theory – which there was not. However, while they were again looking for that, there was a follow-up for a white mass – or potential tumor that had been found. It indeed showed up again, but on the positive side it has not gotten larger. That was a relief, for now! Neurology stated it is possible it could be an anomaly, but we will again repeat in 6 months to keep our eye on this “spot.” While digging up the link for that update we were reminded that Elias had episodes just days after the last scan too. In our opinion that is purely coincidence and not relevant, just odd.
We are going to leave this update there for now. Obviously things are a little on edge and tense as we just wait for if/when Elias stops breathing again. It will be that way for the next day or so until this series passes. We will keep you all updated if there are any significant changes. Thanks for the thoughts and prayers.