Friday, October 21, 2011

This is the week that never ends...Part 1

Monday, we had a routine GI appt with our favorite doctor, Dr. N. He looked at her and told me he thought she doesn't look very good, ie: losing muscle tone, looks more unhealthy than the last time he saw her 5 weeks before - and that based off the way she looked, he thought he would possibly need to admit her to the hospital.  He told me he thought it was time to get a G-tube ASAP to see if she will gain weight with that. I told him I trust his judgement and if he thought it was time, then we would discuss it and set up the appt in the next week or so. Before we left, he said, "If she looks any worse or starts acting funny in the next day or two, make sure you bring her in." I was pretty upset when we left, because I knew that if he was that concerned that he obviously noticed a huge decline in her. Its hard to see it when you are with her everyday, its not quite as obvious.

Tuesday, 10am and she's still asleep since 8:15pm. I decide to check on her and wake her up, and she spends a few minutes acting a little out of it, and then starts screaming at the top of her lungs. These screaming fits go on all morning long, lasting 20 minutes or so each, then she would be okay for 5-10 minutes and randomly start back up again. Because she's had UTIs in the past, and they were accompanied by lots of random crying, I thought I would go take her in. I called up to the GI and told him what was going on. He said if they were going to admit her that he would push for all of the geneticists testing to get done while we were there.... make plans for the tube, etc.

After a couple of hours back and forth, they told us they wanted us to go to Detroit so the geneticist could run his tests right away. I talked to them and they said even if she was admitted they wouldn't run the tests any sooner. Grrr. So Adam and I sat down and talked and decided St. V's was our best choice, as they are familiar with our history and the genetic counselor had said they could run all the testing here anyway if we were already here.

So 3pm Tuesday we arrive in the ER. We spent FIVE hours explaining to them the entire "Addison" Saga from the day she was born, over and over. Then they asked questions and we were like, call Dr. Naddaf please! So they did and then someone from the peds floor came down to decide whether or not to admit her. Finally someone says, screw it, you know her better than we do, if somethings wrong, then we better check it out.

And that is how we landed ourselves back on the 6th floor. And our little rockstar girl heard "Oh my gosh Addison you look so grown up!" and "Oh, she's back!!" all the way down the hall. She's a celebrity here for all the wrong reasons....

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