So about yesterday -- forget everything I said that was associated with the word easy. Actually, that probably just my exhaustion setting in cause truth is Angela is still doing really well. She has no pain and is her happy spunky and sassy self. We are experiencing a few bumps but really she is doing just as we would expect.
I jumped the gun in thinking that this would be a stress free visit. Not that I ever really believed that but as of yesterday morning things were looking pretty darn good. The issues that we are having now surround her ability to tolerate her tube feedings. Angela has two issues. One is motility, which causes her stomach to empty poorly and the other is her reflux. The reflux was reason she had the nissen -- so that she would stop throwing up every time we fed her or even looked at her in the wrong way. But the poor motility is still there. Angela did so well on J-tube feeds, but after the nissen was placed the J was pulled and just the g remained. Her belly just isn't handling the volume. But there is an answer for that -- just go back to the J for supplemental feeding. The only issues is that it's a weekend and getting things like that done are very difficult. So we wait.
The other issue is that we tired to feed Angela today and she is having swallowing issues. To be honest I don't know what in the world she is doing. It looks like she is vomiting but, obviously not from her belly, but rather it looks like she is holding it in her esophagus and then she wretches it up. So sad to watch.
Truth is today has been difficult for many reasons. The main one right now is that I'm just so tired. I do not sleep here at all. I know things really stink right now but I'm trying to keep focused on our end goal -- going home and helping Angela to have better quality of life.
For now we just take it second by second and try our best to stay sane.