Thursday, May 31, 2012

She's a Smart Cookie

Meds and sleep continue to be a struggle for Miss Olivia.  Any masking agent for her crushed up pills is only working for a matter of days before she catches on and starts her dry heaves with every spoonful of applesauce, yogurt or pudding.  The compounded liquid meds are actually slightly easier to deal with because Brian's been mixing them with really strong liquid flavors like VitaRain or Propel and Olivia's just desperately thirsty and will chug it down even if it doesn't taste great.

My understanding was she didn't sleep much at all last night, thirst getting the best of her.  There's been continued effort to pump her full of salt with just about anything she's eating and that's making her thirst even worse.  Sadly, she's also waking up frequently looking for medical staff to take vitals, administer meds or draw blood.  I think Brian's going to back off all the salty foods today to see how her behavior changes if at all and that makes their day a little easier to deal.  Liv has become extremely attached to her blankets, wanting to be covered as if they will protect her from anyone poking and prodding her.  She took a few steps last night but is still generally refusing to stand on her own.

The incision is definitely angrier looking the other two from the Norwood and Glenn.  As I understand it, this is relatively normal as there was more scar tissue to cut through and her sternum was harder so there is going to be more inflammation and swelling this time.  Keeping up with the med schedule is getting better and I'm so excited to use this pill organizer I got from work.  It's a 7 day organizer with 4 boxes per day for multiple dosages and each day is portable if we were to be out and about.  Very neat, kind of sad that this makes me excited, but I'm trying to find little positives along the way.  Another positive, the shirts that the Grandmas and I spent time trying to rush through Pre-Fontan have really come in handy.  They're all Olivia's wearing right now. The ribbon closures were best for the hospital just as I expected with the chest tubes and additional lines and now she's sporting mostly the Velcro closures.  I'll try to get a picture soon to post but Miss Liv is really not feeling herself and basically refuses or cries anytime someone attempts to take her picture.  It's like she knows that she's not looking her best and doesn't want those to circulate.  Heart-breaking!

1 comment:

  1. Aw poor baby!!! With the crushable meds, can you mix them with her liquid meds instead of food? That's what I've always done with Bodie's pill meds and it works really well. Just draw up the liquid med and dispense it into a little shot glass or medicine cup. Then crush the pill and mix with the liquid in the cup. And then draw them both back up into the syringe. I honestly don't know why hospitals don't suggest doing this for all pill meds for kids at this age. (As long as the meds can be mixed, it should work.) Hang in there mama - it seems most of these kids go through a rough adjustment the first week or so at home and then everything settles down...sending you guys love and heart hugs!