Wednesday, April 2, 2008

Day 9 wean (10 units)-

Reagan slept fairly well last night...considering. We put some arm restraints on her while she was sleeping (Pedi-Wraps-they basically prevent her from bending her elbows so she can't reach her eyes) and she didn't seem too bothered by them. She wakes up periodically through the night anyway, but last night it was just a little harder to get her to go back to sleep...maybe her eye was bothering her or maybe it was the restraints, who knows. We took her in today for her follow up and they took her patch off (more like ripped it off) and the doctor said her eye looks good (not infected or anything). It's hard to tell because she's not opening it much, I think because it is still a little irritated. The doctor said yesterday that it shouldn't really hurt that much but that it probably just feels when you get a scratch on your eye. It's a little blood shot along where the stitches are, but the doctor said that's perfectly normal. We have to put 2 different eye drops in every 2 hrs and the other 4x a day! Fun, fun, she just loves that! In 2 weeks or so, the doctor will change the prescription in her glasses and she'll have to actually start wearing them. At that point we'll have to begin the patching. Just to clarify for everyone...the patching is done to strengthen the "weak" eye that was operated on. So we'll have to patch her good eye, forcing her to use the weak eye, for half her waking hours every day for anywhere from 5-8 years. Talk about a long term commitment! On a (somewhat) positive note...if the cataract in her other eye does eventually progress, it would basically be patching itself and strengthening the weak eye, and after having it surgically removed she probably wouldn't have to patch anymore!

On a different note, yesterday we dropped her dose of ACTH down again. Only 6 more days of shots and we're done with it! (Although the nurse did say that she probably needs to wait a few weeks after being totally off the ACTH before we start taking her out again, which sucks because I was hoping to start her therapy back up ASAP!) We did start her on a new seizure medication today...Felbatol. She's starting out on a really low dose 0.5ml 2x day for a week, then increase to 0.5ml 3x day for a week, and then to 1ml 3x day (which is still considered a fairly low dose). It seems like a very slow increase, but at least we'll be able to watch her closely for any negative side effects. She'll have to have her blood checked every 2 weeks while on this medication, which is a step down from the weekly checks she's been doing while on the ACTH.


Anonymous said...

So much going on, it gets me dizzy. I cried everytime I looked at her picture with the eye patch, it hurt both physically and emotionally. You are both so strong to go through with this everyday. I love you both and especially that little one.

Kim said...

you really have to go slow with the felbatol. it can have harsh side effects, but they are very rare. conservative is best!
lily was on that for quite some time and it was a good one for her.
i hope it is a good one for reagan.
lily had eye surgery 1.5 yrs ago and she was more annoyed than in pain. i had lasik, so i know it is annoying, but not painful. i hope that is the case for sweet reagan!