Journal entry by cat h —
Teagan update: Teagan's recovery at home has been going well overall. It has been a bit more mental overhead for us because much of our daily routine is changed, from the medications she's on, when she gets them, how we prepare her meals, hydration, the extra pottying required due to the super hydration, the overnight continuous water via g-tube pump, the stroke watch vigilance, and the extra supervision she needs when she moves about her environment...
And yet, she's making great strides getting back to a new norm. She even returned to school and started 6th grade this week!
On the flip side, last night was particularly hard. The feeding pump that gives her continuous water at night ended up having an alarm around midnight. This darn machine has the most peircing error alarm like a super powered smoke detector. So I ran into her room to resolve that, and then was so on edge that it would happen again (this isn't the first time it alarmed... when Teagan rolls over, it can occlude the tubing, causing the pump to alarm), so it was difficult to fall back asleep.
Then at 3am, I awoke to the sound of Teagan rhythmically gasping for air. I ran into her room and she was in the midst of the biggest convulsive seizure we've ever seen her have. She's never had respiratory distress like that during a seizure. It lasted another 20 seconds and finally ended. She had right sided weakness for a while afterwards, but fell back asleep. But this mamma was still shaking and couldn't fall back asleep so easily.
Later today we had a post-op appointment with the neurovascular specialist and neurosurgeon. So we have a plan for how to try to alleviate the night time pump alarms, and to try to battle the nasty seizures if we can. And it looks likely that the second surgery will be the second week of December. While we were there, Teagan made herself comfortable by putting her feet up on the neurosurgeon's knees (which i had to snap a picture of) - she's still our master relaxer! 😉
Thanks for the continued messages of support - we are so grateful ❤