Feb. 14

Happy Valentine's Day to everyone!

Megan woke up today not feeling well and hasn't gotten any better so far. She's had some bad stomach pain, dizziness, nausia and just a small amount of head pain. The decreased head pain is good! Her vision seems to be worse though, she can't really read at all right now.

Today she had ultrasounds of her liver, kidneys, pancreas, bladder, gall bladder and heart. They are checking to see if she has other symptoms of tuberous sclerosis in her other organs. If not, she might not have TSC. If she does, then we have a probable diagnosis. This neurologist isn't all the way convinced, but he's suspicious.

Unfortunately, he did order for her to have a spinal tap tomorrow, so they have to lower the amount of blood thinners they are giving her, in case they nick something during the procedure, they don't want her to bleed too much. He says if indeed her brain swelling is all from the vein thrombosis, it might really help relieve the pressure that has been giving her so much pain in her head, ears and the blurry and double vision. She's going to be happy to know she is going to be put to sleep for the test so show won't know a thing. So while she's asleep, they are going to try to fix her port and get the second side re-accessed and working, and re-access the first port that is working (has to be done once a week, if accessed) - and she won't feel a thing! Oh, thank the Lord almighty for that one. I don't think we can go through that pain and suffering again while awake.

The oncologist ordered a speech evaluation followed by a barium swallow test and that will be tomorrow also. She still can't swallow anything more than a shake. She hasn't eaten real food in like 18 days I think. But, she has the TPN and Lipids they're giving her for nutrition, which helps. But, they are giving her very high blood sugar readings, making her almost diabetic at the moment, so he is working on adjusting her sugars to get them back down to normal. He says it's from the steroids she's getting.

So, it's 6 pm and we're sitting in the quiet and dark...and she just kinda yelled out at Kelsey in her sleep...kinda funny. Oh ya, yesterday early morning, she woke up seeing an old lady in a pink pajama gown floating up to the left of her...I said maybe we need to get a shrink next...the oncologist laughed. He said sometimes the steroids can make you have episodes like that...I think he was just being nice... :)