Monday, May 27, 2002

4 Months 21 Days

The past week & a half has been pretty rough. She was taken to the operating room to have the breathing tube taken out on Thursday. The doctors were pretty for sure we were going to have to do a tracheotomy. They thought there was a pretty severe obstruction in her airway since she was so hard to intubate in the first place.

They put a scope down her throat to check things out...and GUESS WHAT?!? All was PERFECT! Not a thing wrong. She came out of the OR with no breathing tube & no trach! We were so excited I could hardly contain myself.

Oh and about her seizures. The shots are WORKING! Her Phenobarbital level was 77 a couple of days ago. Now, as you may recall we were trying to keep that between 90-100. We are now weaning her off of her medications too! Can you believe it?!?! The ACTH shots were just what she needed. No nasty side affects of medications anymore (like too much sleep time!)

She is having wonderful alert time & sleep times. Talking up a storm! In fact, Saturday night she decided it was her turn to keep us (me) up. She talked all night long & then slept most of the day on Sunday. Crazy girl! She has got it turned back around the right way now though.

She is doing so well that we came home Saturday afternoon & she is almost completely weaned off of the oxygen! She went 9 hours today without ANY whatsoever. I plugged her back in this evening because she started to show some low numbers & I wanted to give her a break throughout the night. But 9 HOURS!!! Prior to this, she wouldn't even last an hour before needing the oxygen again, so this is major improvement. This included taking her for a ride & having to be in her car seat. Which normally she doesn't do very well in her seat.

Lets keep our fingers crossed that the shots continue to work. Normally these shots are only a 2-4 week treatment. When you stop them, the seizures are supposed to be under control for a while, sometimes forever. If the seizures continue, you repeat the treatment. We are not sure what is going to happen in her case, seems how hers are so hard to control. Only time will tell.

Thanks for all of your continued prayers. I'll send another email again soon.

Thursday, May 16, 2002

4 Months 10 Days

...back in the hospital. We took her back yesterday morning. She was having more bradicardia episodes (stopped breathing). She had them at the hospital and they have re-intubated her. Ironically we were heading there to see the Pediatric Neurologist from Seattle anyways, so he got to see her at her worst.

Once she stabilizes again, they are going to try hormonal steroid shots to try & control her seizures better. If that doesn't work, then we are going to try the Ketogenic diet. The shots will take about 2 weeks to get an idea on whether they will work or not. The diet will take a month or 2. So we are looking at a while before we will know for sure.

She will at least be in the hospital for a week while they start the shots. Kevin & I are pretty devastated. I go back to work on Monday & we just moved into our new home this past weekend. All was looking pretty good, & now we have another set back. to the hospital. Please keep us in your prayers.