Primary Children's Medical Center 8-22-11

It was obvious to me yesterday, even though I was not here myself, that Miss K needed a little more of something to help with her SVT. But since the Doctors didn't even check in to see how she was by phone at least, they had no idea until today, therefore they just barely made their decision whether they should do more or stay where we are.

The new plan is to keep her on the dose of Amioderone that she's on now but they want to up the dose of Propanalol. This means keeping her here in PICU another full 2 days because they want her to have at least 3 doses of the new Propanalol amount before they wean her onto the oral of the Amioderone. Propanalol is only given every 8 hours so that puts us at getting the 3rd dose tomorrow around noon sometime. The oral Amioderone is also given every 8 hours so we won't be off the IV drip until sometime Wednesday evening or Thursday morning. They don't want her going home until she gets at the very least 48 hours of observation on the oral Propanalol and oral Amioderone, then if she's doing well they'll send us home.

I'm frustrated. I had plans, things all worked out over a month ago about how these past weeks and the next few weeks were going to go. It's nobody's fault that it all got screwed up but it's still frustrating. I had a big birthday party planned for Roo this Thursday evening, I invited all our close family and had a Mater themed party all planned out, right down to an easy but cute and way fun home made cake. That's now not possible, it looks like we'll be celebrating here at the hospital or maybe we'll take off and go to the Zoo Friday, or maybe even do a birthday party with whoever can make it at Sizzler or something with a store bought cake (hopefully a Mater one if possible). Poor Roo :o(.

Poor Miss K with all her "stickers", tape and wires! Between the pulse ox that's always on her hand or foot with a wire connected (and the possibility of light burn if they don't move it around often enough), the blood pressure cuff we have to move around from leg to arm and never on an IV limb, her IV's (she has to have 2 at all times), her leads for the heart monitor and the stickers for the EKG's she's a real mess! The sticky from all of this is horrible and won't come off so she's covered in dirty sticker marks where things have fallen off or been moved. The tape they use to keep cotton balls on bleeders and to keep IV's in place makes her red and irritated, even swollen in some cases. We're always tangled up with wires and IV's, it's always a mess and a real pain to deal with.

She's getting stronger and wanting to hold her head up more and more. She's getting more and more alert for longer periods of time. She started trying to coo for me today, it was so adorable! And she's getting pudgy :o), starting to get rolls on her legs and arms :o). She loves to sleep chest to chest, it's a great way to calm her down when she's all worked up. When she's in a really deep sleep she sleeps with her mouth wide open and drools all over. She loves to have her hands by her face at all times, she's always got her hands on her face in some fashion, it's so cute, sometimes when she's upset and just starts calming down she puts her little hand over her eyes like she's got a headache, lol!