Fall is my favorite season. I love the colors of fall. I love the crisp air of fall. I love wearing sweaters and jeans. I love that it gets darker a little earlier. We had a very quiet weekend. The weather was a bit too chilly and wet to really get out and enjoy it. We ended up putting Evan’s NG tube back in on Friday evening because he hadn’t quite ate enough throughout the day and was on to me when it was time to take his bottle loaded with medicine! Oh boy… he figured me out way too fast. We didn’t have any issues inserting the tube but after his last feed of the evening though the tube he had some major gas pains and nothing I could do soothed him. Ryan was able to get him to sleep a couple of times but he was jolted awake each time. I eventually brought him in the bed to lay with me instead of running back and forth. We enjoyed Saturday and the gas subsided and all was well. Fast forward to tonight, Evan had a bottle and chugged it a little too fast resulted in him throwing up. After he threw up he needed a little oxygen until he recovered and as I was getting it I came back and guess what? He had pulled out his NG tube. Now, I admit I probably over reacted when I saw it hanging out of his nose. I mean it isn’t the end of the world but it is not pleasant inserting it. He hates it and is very good at pushing it out his mouth. So, tonight he is NG tube free and we will try again to go without it. I am praying this is it and we won’t have to put it back in. The most challenging part is coordinating his feeds with the medicine so I have a schedule which I think will work which we will start tomorrow. He is sleeping now but I will be waking him up (crazy right! Haven’t you ever heard of don’t wake up a sleeping baby) to give him medicine but prayerfully he will go back to sleep without too much fuss so that I can get some sleep too.
Tonight on 60 minutes they mentioned one of the drugs that Evan is on – Gleevac. Gleevac is the chemotherapy drug that Evan gets daily that is used to stop the multiplication of the cells in his pulmonary veins. I wish I could say I was surprised by what I was hearing but I had heard it numerous times from a couple different people – IT IS EXPENSIVE. We were denied by insurance twice for Evan to go to Boston to participate in the trial and get the drug. Let that sink in – we were denied twice before being approved…. but we FOUGHT AND DIDN’T GIVE UP. Literally, imagine a price tag being put on your child’s life or your own… But God. Avastin is also mentioned in the report. Avastin is the second drug used in the FDA clinical trial if the PVS does not respond to the Gleevac. To watch 60 Minutes report on the high cost of cancer drugs click the following link:
It is evident we need change on so many levels but I am thankful that we are able to get this drug.