Mostly so I can understand the things the doctor's DON'T explain and understand the things that they DO explain but they don't make any sense to me ...
This morning I talked to Kameron's pulmonologist and he said Kameron has gotten SICKER since he has been gone (which was the beginning of LAST week). I am so confused ~ I thought that things were looking better, his numbers were increasing, his platelets were going up, his pancreas is looking good, his kidneys are doing good ... etc. etc. But, I guess his lupus is just kicking his butt.
Here is my theory ... all this time they have been treating all the individual things (his platelets, his kindeys, his blood pressure, his pancreas) but, they haven't been addressing the issue that CAUSED all of this; his lupus. So, the lupus just kept getting worse and worse. That's my theory ... who knows how correct it is. Don't quote me on it ;)
What they are going to do is re-start him on the plasma forisis, that is the treatment where they pull all his blood out of his body and take out his plasma and replace it with fresh plasma. So, they will hopefully be able to start that if they can get the line in early enough. They are also going to start him on the Cytoxan today. We are just waiting on the pharmacy to come calculate his dosage.
Today he is on the propofol (the sedative) and he is also on a medication that paralyzes him. So, he is sedated AND paralyzed. He ain't goin' anywhere! :D And they don't want him awake AT ALL! They have this thing on his forehead that measures his brain activity to make sure he isn't getting TOO sedated.
Also, this morning the nurse took his temperature and it was like 93 degrees! So, he's got a warming blanket on him. And I am not sure what his platelet count is today so I don't know if it is up from yesterday's number.
Pray that we have a week filled with lots of progress and that the Cytoxan will do the trick!
Monday, July 27, 2009
I wish I were a doctor ...
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8 comments:
What a roller coaster. I know what you mean about understanding what the doctors are saying and wondering about what they're not saying.
youre so good at updating. we appreciate it. <3
Bless you for keeping us all up to date and staying so optimistic! This must be incredibly hard for you, and you are being so patient and encouraging. Remember, when we all look back, this will just be a short second in time - hang in there - you are in all our prayers!!
I hope things improve and that the doctors make you understand everything!! You are one strong woman!!!
You are such a trooper...We pray for the best for Kameron!
Your family and your son are in my prayers. The plasmapheresis and the cytoxan ARE treatments for the lupus. The first removes autoantibodies and the second stops the immune system from making them. It is Kameron's immune system attacking different parts of his body that causes the problem. That is what lupus is. And those of us with lupus need specialists, often a small army of them, to deal with the parts of our bodies that are affected. The doctors are taking very aggressive steps to help your child get better!
I know you have a good team of doctors and that they are doing their best to get Kameron back up to speed. Sometimes you *do* have to wonder, though, if they actually talk to each other very much, or if there is someone who sees the *BIG* picture, because the story seems to change with which doctor you're talking to (like the pulmonologist saying he's *sicker* while the other Drs seemed pleased with his progress...)
Do you have access to a lupus-specific support group to help translate the Dr-ese?
Keep taking care of yourself and your family and know you have loved ones around the country still rooting for you all...
Oh Jami, it was so good to see you today! You are amazingly strong!!! Thanks also for keeping us updated on Cameron, you guys are always in my prayers!!
Love ya girl!
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