leah update of the day
I talked to Leonard this evening. The good news is that Leah didn’t have any seizures over night, but she did stop breathing for a minute at a time 3 different times. 
The pediatrician called in some experts to help come up with a solution, and they’ve changed her dosage of anti-seizure meds, and added an additional one. This seemed to be a good thing, as she didn’t have any seizures all day. L says she’s still pretty drowsy from this, but they explained a little better that the drowsiness isn’t a permanent side effect, more a getting-used-to-the-drugs effect.
L and S *love* their pediatrician, and that goes a long way in making them all happy. And several of the nurses are being really great and helpful, too.
The main thing that is keeping her from coming home is that they need to figure out if these new meds are enough to keep her from having seizures and seizure related activity (the breathing issues). And then, they are working on giving the meds with her milk rather than through an IV. Of course, that will be essential for her to be able to go home.
She’s been nursing good, and they are feeding her breastmilk from a cup in between when Sarah’s there (to reduce nipple confusion). This is a good thing, as she’s getting enough food this way, and that let her have her first messy diapers... that means that some things are going right in her body!!!
I am feeling very blessed. God’s hands are clearly on Leah, and the whole situation. L said tonight that if things had been different, this whole situation would have been harder—for example, if him and Sarah had been married, they wouldn’t have had the basic health (state funded) insurance that has covered all of this care. Same for the midwife who came recommended from the basic health office, who recommended the pediatrician. Now, we just need to keep sending positive loving thoughts towards the hospital so that she can finish getting better and go home and be with her family permently 
Thank you again to all of you who have been thinking of us all and left me words of love and comfort. :iluvu:
Comments
God works in mysterious ways.
I’m glad that they don’t have to worry coverage issues if they were married at a time like this, that’s the last thing that’s needed. My thoughts and prayers are with you, Leah and her parents. She’ll make it through and she’ll amaze all of you.
Posted by: Carla | June 16, 2003 10:39 PM
God works in mysterious ways.
I’m glad that they don’t have to worry coverage issues if they were married at a time like this, that’s the last thing that’s needed. My thoughts and prayers are with you, Leah and her parents. She’ll make it through and she’ll amaze all of you.
Posted by: Carla | June 16, 2003 10:40 PM
Oops, sorry Kristine. I kept getting errors saying it wasn’t working. Should have ignored them.
Posted by: Carla | June 16, 2003 10:44 PM
It sounds like she has a lot of people watching over her. With that many doctors they’re bound to make a lot of progress.
I’m still keeping you all in my thoughts. 
Posted by: Melissa | June 17, 2003 05:20 AM
I’m keeping your family in my prayers. It sounds like she is getting the best of care and I’m sure they’ll have this figured out soon so she can come home.
Posted by: daisy | June 17, 2003 05:59 AM
{{HUGS}}
Is Leah on Phenobarbital? Just from what you’re describnig, that’s what it sounds like. It stops the seizures, but it builds up in her system, takes a long long time to get out, and that causes the drowsiness and sometimes the breathing problems. Maybe you could do some research on whatever she’s on - I bet Leonard and Sarah would appreciate even more details. : )
Meanwhile, all of you are in our thoughts. Love you so much, sweetie. {{HUGS}}
Posted by: Rina | June 18, 2003 01:06 PM
{{HUGS}}
Is Leah on Phenobarbital? Just from what you’re describnig, that’s what it sounds like. It stops the seizures, but it builds up in her system, takes a long long time to get out, and that causes the drowsiness and sometimes the breathing problems. Maybe you could do some research on whatever she’s on - I bet Leonard and Sarah would appreciate even more details. : )
Meanwhile, all of you are in our thoughts. Love you so much, sweetie. {{HUGS}}
Posted by: Rina | June 18, 2003 01:07 PM