Care Conference

We had our care conference today with a good showing of key doctors. It was a productive meeting and we quickly learned that the “go home on no support plan” was never a favorable opinion of any of his doctors, except HER! Of course to listen to her report that was the way she had been leaning all this time. What ever happened to mom and dad being afraid to take Elias home without Si-Pap? Yeah, that is what we thought. Oddly enough Dr. Wood was running late and we were trying to decide if we should begin without him or not. SHE of course quickly chimed in that we should. Hmmmm. Dr. Wood arrived about 10 minutes in so we were recapping what we had covered. SHE started off telling him what she had reported and it appeared that Dr. Wood was hearing the plan for the first time, I thought SHE told us she had spoken with him. Essentially, Dr. Wood had made himself pretty clear in the consult room after the bronchoscopy last Wednesday and I had picked up on that. SHE was trying to be the self serving high & mighty doctor and when I challenged her opinion against Dr. Wood, she all of the sudden became on board with the plan that exists now. We never said anything to embarrass her or bring up the events that lead us to calling the conference during the meeting, although we wanted to. But those that really know me understand I would rather make you sweat and constantly fear when I am going to use it against you. The one point that really irritated me the most from her was when Dr. Mehta was discussing how she felt the Flu & synagis (RSV) vaccines should be given right away versus waiting until discharge she kept pressing to give them later rather than now. Katharine finally spoke up and said look just give the shots, there is no reason to wait. Otherwise SHE kept her mouth shut most of the meeting which was the only thing she could do for fear of us exposing her idiocy to her colleagues. Although she has not finished her desire to tick us off as I will explain about that in tomorrow’s update.

Focusing on the meeting itself now…there was a common theme and agreement among most everyone in the room. That was Elias’ airway is at best frightening and should be treated as such. Dr Wood talked about simple things like accidently suctioning too deep could actually be fatal to Elias. This is scary because it is common for that to happen with Nurses especially at home. So we will have to be very vigilant. He also warned us about the Passy-Muir valve and at the smallest sign of issue to remove it. The pressure could also become fatal if not properly monitored. We also talked about Elias’ extremely limited lung reserves. The lung reserves allow mucus/masses to grow dramatically without the patient noticing any dysfunction. In Elias case this does not exist which is a recipe for quickly deteriorating and going into respiratory distress. Basically, it was pretty hardcore on the things that are very likely to go wrong without much care and vigilance. It is pretty frightening stuff, especially coming from a doctor with his many years of experience. Dr. Mehta also wants to get Elias on immunoglobulins g (IGG) infusion therapy for the time being. His numbers are low for this and she feels this will help boost his immune system a bit and help get him through the harsh months ahead. From the ENT perspective we got some great news. Audiology has been contacted and they are going to attempt to fit Elias with a type of bone conduction hearing aid!! HURRAY! They are suppose to come speak with us in the coming days. We are going to attempt to have the video camera ready in case they actually have some to try and Elias might hear a little something for the first time. That will be such an amazing moment. The overall consensus and plan we have decided is to send Elias home with a ventilator for 12 hours at night. They want us to get as much nursing as possible which the case manager is saying we will get 16 hours with that amount of time on the vent.  The problem is it will take her realistically 3-4 more weeks, so we much stay until that is worked out. There are still things they need to do with Elias but they think they can be prepared by the end of next week with our teaching and certifications and all the other things. So we will again, as it always seems to be waiting on the nursing!

Today Elias was not doing well. He has been spitting up a lot, his secretions are thickening and are yellow which is not good. He is still on an antibiotic from the infection last week, but this might be viral. There was a slew of lab work sent so hopefully we will know something more tomorrow. I will update again tomorrow night with some more information we are expecting. Thank you all for your continued support and prayers. It has been a rough one and we are ready to be home.