Jason got chemo yesterday. 1 dose and we wait. The next month is looking for improvements and seeing what is going on internally. The idea is the immune system will be shut down and the B cells already circulating in his body will begin to be killed off by IVIG and as his body is no longer producing anymore the swelling in his brain will subside and he will slowly return to being "Jason'. This is the goal. The Moral of the story, the ending we all want. But again - from here to goal there are yards and yards that are open to complication.
I left Carmelo here. I have been here 3 days and I have not showered - so I went home to shower, and buy better products for them to use on him to prevent bed sores. I am exhausted. I slept for 2 hours in my bed and got up panicked and raced over here. Again feeling guilty for not being here for the few hours I left. Jason was fine. Chemo was done. He is resting comfortably. As I sit here, doing work, returning emails I look up at his virtual video game screen and notice his blood pressure is low. Again, I am layman - I know nothing about medicine. Nothing about what should or should not be done to anyone - but I ask a lot of questions.
I ask A LOT of questions.
Jason's blood pressure is taken all day long and there is something called a map. For you or I 120/80 or some slight variation is ideal. For Jason because of his current condition, his numbers are different they are usually much lower - and one thing they tend to go by is an additional number after his blood pressure that shows in parenthesis called a map. They tell me that the "map" should not go below (60) for long. Sitting here, looking at his Vital Video Game - I notice Jason has dipped down to a map of (42) and remained there for almost 2 hrs.
I ask the nursing student who is helping and he tells me in a friendly tone that he is not concerned. He feels confident Jason is ok. I sit here uneasy with that answer. A student should be carefree and not concerned. Somebody with kids will always be. So I walk over to "the doctors' who now run into his room to check, and want to know when did I first notice. Now his medication is being stopped and they are giving him a bolus of fluid as they assure me they don't think anything is wrong, and that he is ok. They thank me for bringing it to their attention because 'we are a team and we help each other." And need me to keep watch of any other discrepancies I notice. Me? Me!?!? His mom who doesn't know what the hell she is reading, but picked up a little jargon living here for so long? They want me to keep watch because they are so incompetent doing their jobs is beneath them.
Have you any idea how tired I am? Double and triple checking them? Nobody knows what they are doing here. How many of their mistakes am I going to find and fix? I can't trust them. I shudder to think what would happen if I had stayed home today and tried to sleep in my bed. I could have been under the down comforter that felt like heaven sleeping in peace while my son was here developing organ failure. Although this is Columbia Presbyterian a hospital affiliated with one of the most prestigious IVY League schools in the country these are the most intellectually astute idiots on the face of the fucking earth. They encourage me to go home everyday. EVERY SINGLE DAY they ask me why I don't go home to sleep in my bed. And say, "He is in good hands. We are the best at what we do." What is that exactly???? Because I have yet to really figure that out. The next person who asks me that I am going to scream at the top of my lungs:
BECAUSE IF I LEAVE YOU FUCKERS WILL KILL MY SON!
I can't believe this is happening.
As a health care provider, I've been reading and keeping up with your posts. You need to have a little more faith in the providers at your institution. From what I read they are doing everything right. And so are you. You're a wonderful mother.
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