4th Birthday Photo Session

4th Birthday Photo Session

Saturday, September 18, 2010

Tired, but Loving It!

Our first night was a glorious success.  The Bean slept from 7 p.m. until about 6:30 a.m., when she decided it was time to get up and get going.  I remember waking up several times to do the 'breathing check' or wellness confirmation. Once I remember waking up, upset with myself that I'd fallen in such a deep sleep.  I startled myself awake.  Eak.  Our kitchen counter looks like a pharmacy.  Her room is full of medical supplies.  Today, we had what looks like an atomic bomb delivered.  A huge tank of oxygen, can last 19 days on that.  Ugh. As well as several portable tanks.  We have to come up with something better than we have right now as it's a two person chore to move her from upstairs to downstairs, even a mere eight or so steps.  Carrying the Bean and her current O2 tank is not a solo job.  So, we've spent the day working out organizational kinks like that.   If I'm not trying to make things around the house functional, I'm dosing out the med's of the hour, or prepping for the next feeding.  I forgot how exhausting all this is, yet, I haven't felt this contented in such a long time.

Before the last dosage of med's that has her passed-out and sort-of snoring, I was able to take this picture of Andi starting to enjoy some of her gifts.  Hopefully she had her manners on and sent a thank you note!  I'm trying to bring her up right, but, you know the hospital staff weren't leaving her alone long enough to really get anything done.

Her dope dosages increased, as they stretched it from six hours to every eight hours.  I haven't seen any negative side effects or withdrawal between dosages, if anything, it's making her sleep longer than usual.  The only negatives I've found is having her tethered to an O2 tank.  It makes it near impossible to hold her and walk from room to room.  I can't have any open flame, or heat source near it either.  That hindrance, plus the big ol' atomic bomb in her room have me hoping that we don't need this 'therapy' much longer.  Puh-lease, Puh-lease, Puh-lease!!!   The only other complaint I have is her G-Tube is leaking.  Sometimes it's formula, sometimes it's a mucous.  The formula stinks, and it gets all over her clothes, to the point that she's having more costume changes than Cher at her Las Vegas show.  It's rather nice to have her home though, and I'm pretty hopeful we'll get to keep her this time.

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