Discharge Wrap-up

Elias was discharged late Friday evening without any real progress in figuring out what caused the episodes where he randomly stops breathing and drops his oxygen saturation levels. Another sleep study was done as was EEG for 40 + hours without an episode. The overwhelming theory is that this is a central issue and not a mechanical one. So Wednesday afternoon in the Pulmonary clinic waiting room was the last episode. We all agreed we could sit there forever just waiting for another episode and hoped it was caught on a test, but that is not practical for them and certainly not what we wanted either. If he were to follow the same pattern he did last fall with these next weekend would be the time frame we could expect to go through this again. From September until the end of October Elias had these spells for one day then nothing for 12-14 days before repeating. Hopefully, there will not be more of these. We are going to follow up with GI and coordinate with an upcoming surgery for an impedance probe to see if reflux is the cause. It was attempted this admission but failed and determined it needs to be placed under anesthesia next time he is under. We still do not completely understand how reflux could cause this, particularly so randomly, but it is a theory we want to work out. One thing we were surprised with was the fact that no one looked inside the trachea at the airway itself to see if there was swelling, granulation tissue, etc. I mean if you are ruling out potential theories why not that too? The biggest reason for not scoping him, which they can do while he is awake with a camera the size of a suction catheter, was because of the description of what Elias is and is not doing during one of these episodes. Neurology has said they are very confident that they see zero evidence of any kind of seizure activity, so that is a plus. So we are simply glad to be home and we will hope the there are no further spells that land us back there.

Since being home, Elias has had his typical up and down periods. The did another stool culture and confirmed the C-diff was still active and changed the medication from flagyl to vancamycin for the next 2 weeks. Hopefully, that will clear up this bout. That is also causing him some issues in the way he feels overall, but we are already seeing improvement all around with the new medication in his system.  Elias was particularly happy to be in his playpen yesterday. You could just tell how happy it made him when we put him in there. That was nice to see. So hopefully we are back to what we call normal with the usual ups and down and concerns managed at home. We are all very tired and are trying to catch up on things that we had to neglect the past several days. It will take a week or so before we are caught up, that always seems to happen. We appreciate all of the thoughts and prayers.