Elias was looking slightly better yesterday. He is still laboring with breathing, but you can see a bit of improvement. The treatments seem to be working, just not quite as quick as we would like. Of course with the treatments every 4 hours he is unable to sleep through the night, so that is also taking a toll on the poor little guy. He slept most of the day in between treatments yesterday and through the night. You could tell he was just tired.
The inconsistency resumed yesterday with the G-tube. We had nothing in terms of leakage since last Friday until yesterday. We went to change his diaper and he had a soaked spot on his clothes. It was significant enough, but immeasurable as usual. We figured between the clothes, bed, and gauze (which weighed 3 ml) there was 6-8 ml of leakage. That is still better than what it was. The test is how does it do the next few days. This has been the problem, it will leak a few, them be beautiful for a few. I fear this is just something we are going to have to accept as normal and deal with it as it happens.
This afternoon we are meeting with a supervisor from the private duty nursing agency. She is coming to assess Elias and have us sign paperwork. As of yesterday afternoon, Elias medical assistance number was still not online for anyone to access. This seals the deal that October 7th will not be the discharge date. The next question is will it be October 14th or another date? We hope to know the answer early next week. It is a little annoying that it is being hung up again by red tape and bureaucra"z"y (as I call it) especially since we went through so much before the application was even begun to be processed.
Hopefully, today will be a better day for Elias. It is so hard to watch him look and feel so miserable. We will keep everyone posted on his progress and of course the new countdown to home.