Brighter Day

I'll start with the good news...yes there is finally GOOD news :-)

Got woken this morning at 7:30am (no that's not the good part) and told a porter was on their way up to take us to EEG. That's the 4th EEG Taylor's had in the past 20 days! Naureen got her hooked up in record time and started the recording. I sat down beside her to watch the screen. She wasn't too concerned about Taylor doing the sleep part today since she's slept the 3 previous times, and her seizure activity is the same during wake and sleep. Once we were done and Taylor was cleaned up, I carried her into the hallway to wait for the porter and saw Dr. Bello sitting in the next room looking at Taylor's EEG. He saw me and said right away that he's very pleased, there's a 70% improvement from last weeks chaotic activity!!!!! Taking the Sabril down has definitely been the right call. Her dose was reduced to half on Friday night, and down to a quarter as of tonight for about 5 more days, then done. Hopefully by then Taylor will be back to her baseline. Maybe even better than her baseline...but let's not get ahead of ourselves!! A 70% improvement from last week is huge and definitely worth celebrating!

Poor pickle is really suffering with her cold though. Very congested. Very snotty. Ick. She's been suctioned a few times to get stuff out and I'm sure at this point she's beyond DONE with things being shoved up her nose! But she's such a trooper, has been relatively pleasant all day.

This afternoon she was settling into a nap, so I decided to do the same myself. Managed to sleep for a couple of hours...both of us! I think we both needed to crash, it was another rough night last night. She was up at 2:30am very congested, heart racing, crying, and making the strangest movements that actually had me wondering if it was a new kind of seizure. She had both legs pulled up and very tense, her cry was different, and she was almost vibrating. This went on for what seemed like forever, but maybe about 10 minutes. When the nurse put the probe on Taylor's finger, her oxygen sats were 81, they should be in the mid 90's. She turned the oxygen mask on and we held it over Taylor's nose and mouth. She slowly perked back up into the 90's and when we took it away she maintained it. Anyways, after Taylor finally settled, she started letting out some very loud gas. Funny. So we chalked it up to that, and I felt better that the movements weren't seizures. She was fine the rest of the night and all day today.

With all her congestion and working harder at breathing, we were taken down for a chest x-ray earlier tonight just to check out her lungs and make sure there were no signs of pneumonia. Thankfully there weren't. Keep up the good work Supergirl or we're never gonna get out of here!

Gave Taylor a nice bath tonight to clean up her lovely EEG gunked up hair. I thought baths were supposed to be calming? She's wired tonight. As I type, it's now 11:15pm and she's just movin' and shakin' in her crib.

Anxious for the FEES study tomorrow. Don't know the time yet, and hopefully her being sick isn't going to prevent it from happening. Fingers crossed.