Because I can’t seem to find the time to sit down and write a real update – here’s a few pics to tide you over!
this is last wednesday when she started to go downhill. Hard to tell from the picture but she was just very puffy in her face and eyelids, and all around not a good color. but was such a good girl to lay and get the cannula (for oxygen) on – she must have known she needed it. On thursday she felt a little bit better – trying to be mischievous and get a huge marshmallow out of the pantry. which she licked a little bit and then smeared all over the fridge! Eyes are still puffy, color still kind of off, but she seemed a little bit better.
Sometimes with all the attention Kendall gets, Kaylen feels a little bit left out. Friday morning she was complaining that her eye hurt really bad, so we taped it up, everyone loved on her and kissed her owies, and what do ya know – ten minutes it was healed up enough to take the gauze off. She has been escalating this kind of behavior lately and I am not quite sure how to best handle it. I want her to understand that I love her and give her attention for things BESIDES medical issues, but then I am wondering how much of it is just normal 2 year old “put a bandaid on every little scrape I get” type of behavior. I am relatively confident it has a little more to do with her sister’s issues than just normal stuff – but, until we figure it out, i’ll just keep taping up random invisible owies and loving on her.
Clearly on the upswing! Monday afternoon after we got all the nasty swallow study leftovers out, she wanted to play again – a very good sign that discharge is imminent! Don’t be fooled by how “chubby” she might look – that is the result of 5 bags of fluids and not nearly enough pee coming out! Her eyes still have a puffy look to them that is beyond the rest of the facial puffiness – but you know, a cute chubby picture is always nice – even if it’s not real pudge! The black and white wires/stickers are her heart telemetry monitors, the circle on her cheek is a “tendergrip” and holds her oxygen cannula in place when it’s on, and the big circle in the middle of her tummy is her tubey – that is the plastic disc (“bolster”) that sits against her tummy and gets resistance from the balloon blown up inside her tummy – the tube comes out of the middle of that for about 10 inches and ends with a large 3-pronged “port” through which we can access her Gastric tube (in tummy), Jejunal tube (intestines), and “balloon” – how we keep it inflated.
She got this “monkey” in the ER after her chest x-ray (nothing like convincing kids they deserve a toy after every procedure – this is REALLY going to come back to haunt me with this one!) – but she wasn’t in the mood to play with it when she got it, so in an effort to calm her down I told her a story about a little kitty (because I can make WAY better kitty noises than monkey noises) – and it thereafter became her kitty. She would make her kitty “meow” noise when she wanted it, and all the nurses quickly learned that it was NOT a monkey, but it was instead a kitty. Kendall just loved that they knew who her kitty was and slept with it every nite in the hospital. who would have thought such a little stuffed animal would bring such comfort?
Feeling better – but still so far to go. I just liked this picture of her for some reason. Maybe its her eyes, or the curly hair. I don’t know.
anyways – that’s all I have done for right now. Time to go start getting ready for the big daddy/daughter dance tonite! (well, i don’t have to get ready, but i have to find tights and “high-heel” shoes for the girls….should be fun!)