I am at a time in my life where I can’t make plans. I can’t think about tomorrow. I can’t say what I’ll do next week or even later on tonight.

Last week, the doctors decided to give John another round of IVIG in the hopes that this one would finally be what helped him over the hump towards wellness. As the week passed, he seemed to be improving. His face movement has improved greatly. He’s now able to smile, wink, and puff out his cheeks. He had some cake icing as a treat for his birthday and did very well. He had some improved strength in his arm today as well.

And then the limbo part. He had a de-saturation – meaning his oxygen level dropped and his heart went wonky. It has happened several times when he’s on his left side. When he was in the ICU at Macon, they ran all kinds of tests because every time they’d put him on his left side, his oxygen would drop. They decided it was just the way he was.

I just got a call about 30 minutes ago that they want to run tests – basically all the same tests Macon did – because his oxygen drops when he’s on his left side. They’ve put him in ICU to closely monitor him and so they can put him on a Heparin drip (blood thinner) until they do the tests tomorrow.

It sounds selfish but I don’t mean it that way. I am desperately worried about him. I go to sleep worried, wake up worried. Eat, sleep, take a bath worried.

But I am a creature of habit too. I like my little plans. I like knowing that I will wake up in the morning and have a plan of things to do. It seems like for the last three months, the plan has been to wake up and survive whatever is going to happen.

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