In-N-Out

Just a quick update: we ended up taking Claire in yesterday When she failed to get better and seemed to actually get worse as the afternoon progressed. In addition to the pain episodes, she started having a lot of seizures, and Klonopin wasn't stopping them. She continued to seize in the ER and was given Ativan, which knocked her out. The ER doc ran some labs, examined her, and checked her shunt (x-ray only on our request), then kind of shrugged and said "I've got nothing."

(Okay, I'm paraphrasing, but she did say she couldn't determine what might be causing Claire's episodes.).

Claire's labs showed she had low sodium, so she was started on a sodium IV drip and we were admitted.

In case you were wondering, as predicted, the nurses had a difficult time starting Claire's IV. Brad said that at one point he counted six different needles in Claire as nurses tried to draw labs and start an IV while she was seizing. I wonder if Emily Perl Kingsley ever visited THAT part of Holland (and if she did, whether she spent considerable time there).

We spent the night, and in the morning, when the Hospitalist rounded on Claire, she asked Brad what he thought was wrong with her. Brad explained his theory (i.e., that the ACTH she has been taking caused potassium levels to drop, which caused constipation, leading to pain. When Claire's potassium levels normalized, she started having regular bowel movements again, but because we have been giving her Miralax, her stools have become too frequent and very loose, which, in turn has caused her sodium to drop. The Hospitalist told Brad that she agreed entirely with his theory and discharged Claire.

Som we are home again. The problem is that Claire is still in a lot of pain. Her eyes have been rolling back and she continues to cry out. We have called her pediatrician, her neurologist, and her neurosurgeon, and everyone is stumped. Brad and I have been alternating Tylenol and Advil to keep her comfortable and are giving her Klonopin to sleep.

It hurts us to see little Claire like this, and we hope for better days ahead. It has to get better. It just has to.