Speaking of “new normal”

We have our morning and nightly medicine ritual down so far.  MC certainly did not like taking her meds in the hospital, and still isn’t a huge fan of lasix, but every day gets better.  She is taking Depakote for her seizures- 125 mg in the morning and 250 mg at night.  (Which will increase every two weeks until we get to her therapeutic level.)  Her Enalapril twice a day- a BP medicine she’s been on since birth, her Lasix twice a day-for fluid retention and her daily asprin, of course.  Not too bad for two weeks post op.  We haven’t even had to give her any of her pain meds or even Tylenol.  Such a big girl.  McCanless has adjusted.  Or not.  I don’t think there was even a skip in her schedule.  She hasn’t missed a beat and doesn’t seem to be phased whatsoever.  She is amazing.  I am too lucky to have such adaptive girls.  They astonish me with their maturity.  We should all be so understanding.

Mary Clare has a horrible skin rash on her chest.  We called our NP and cardiologist last night and it seems to be a skin rash from all of the adhesives from bandages.  We removed everything but her steri-strips from her “scarf,” which looks amazing so far.  She always heals so quickly and so beautifully.   Her little bruised and scarred body is slowly recovering.  We also have another addition to our usual arsenal of meds for Mary Clare.  We have our Diastat, of course, to stop seizures in an emergency (which means after 2 minutes for her).  We’ve also added her O2 tank to her “goes everywhere with us backpack.”  Her Oxygen saturation levels are  still not as high as a healthy heart’s.  They hover around high eighties and low nineties.  Much better than before her Fontan, however!  (They may improve even more after Dr. Bradley closes her fenestration in the cath lab in about a year.)  So when MC has a seizure, because of her special heart, her O2 levels plummet, which is why she turns so blue/pale.   It is strictly from her labored/unstable breathing during a seizure.  For this reason, we’ll give her oxygen during a seizure.  No biggie, just a precaution!  Never hurts to have oxygen around for a heart kiddo, anyway!

Right now, as I sit at my computer desk, I have all of our doors open.  I feel a great Spring breeze and hear a neighbor cutting grass.  Mary Clare is dozing on my bed and McCanless is with Mimi.  Mimi was her substitute teacher today, much to her excitement.  I’m sure they are enjoying an after school ice cream cone or treat.

I’m sure I’ll soon get back into the habit of rolling my eyes at laundry, yard work, or all of my daily tasks and errands soon.  But right now at this moment, everything is just as it should be.  My washer has not stopped since we returned from Charleston, our yard was hit by a horrendous hail storm the day before we returned, and I have not been to the grocery store yet.  Everything is perfect.  We are all home and healthy.

Summer is just around the corner and the girls are getting excited about picnics by the pool, frequent beach trips and of course, our promised trip to Disney World.  Life could not get any better.

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