Friday, December 25, 2009
Sunday, December 20, 2009
Thursday, November 19, 2009
Friday, October 30, 2009
Saturday, October 24, 2009
Thursday, October 22, 2009
Sunday, October 11, 2009
Sunday, October 4, 2009
Sunday, September 27, 2009
Saturday, September 26, 2009
Saturday, September 19, 2009
the spoon! We're not up to nutritive feeding yet, so next week we're
going to have them put in a g-tube. Hopefully, removing the irritant
that is the NG tube will help her move even further towards taking
everything orally. Not to mention keeping that beautiful face free and
Thursday, September 17, 2009
Friday, September 11, 2009
Wednesday, September 9, 2009
at day care is off to an auspicious start. She was so engrossed by the
other kiddos that she wasn't even paying attention to me as I walked
out the door. I hope this doesn't leave her with abandonment issues -
I can hear her telling her psychiatrist, "I turned around and she just
wasn't there anymore!"
Wednesday, September 2, 2009
So, yes, we're home. Mirabel is in good spirits. In fact right now
she's tormenting the cat!
We'll keep an eye on her and take her into clinic next week bit
everything seems to be going well.
Thanks for all the well wishes and prayers.
Tuesday, September 1, 2009
While they were in there, they decided to go ahead and open up the stent in her aorta a smidge, although it was actually looking pretty good. So overall, things are looking up. Time will tell if the widening of the arteries takes care of the edema and low sats, but they're fairly confident that it will.
We're tossing around the idea of getting a g-tube while we're here .... but if they can't do it by end of week, then we'll likely just head home as soon as she's recovered from this procedure.
I'm back at work tomorrow; David's boss went ahead and let him have the day off, so he gets to spend at least another day in uncomfortable hospital chairs. :D
Thanks to everyone who sent their well wishes - I can't tell you how much they mean to us. Hopefully we'll be able to stay out of the hospital for more than six weeks this time!
Monday, August 31, 2009
course. During her cardio appointment on Friday, Mirabel's doctor
became concerned about her puffiness and some fluid he saw in her
lungs. Saturday she looked even puffier (despite going up on her
diuretic) and Sunday morning she was so swollen she could barely open
her right eye (I'll spare you that picture). We measures her sats, and
when they averaged 63 we knew it was time for her introductory trip to
the Children's ER.
Sure enough, after they got her stabilized with some Os and IV Lasix,
they admitted her to the floor to figure out what's going on. They
too a chest x-Ray and discovered that her lung looked better, but her
face remained puffy.
So this morning they did an echo, and are now concerned that there is
some narrowing at the site of her Glenn, where the superior vena cava
is connected to the pulmonary arteries. She is now scheduled for a
cath tomorrow morning so they can get a closer look at the site, and
also get some data on her heart function. If necessary, they may
balloon or stent the arteries to increase the flow.
She's now down to .1 L flow of O2 and fighting a nap she desperately
needs ... But otherwise feeling much better. We will update as possible.