She has started eating a little again – wahoo! We have found that she is aspirating on liquids, but she can handle thick food. And she’s getting a chance to hang out with the fam for a little time. She’s isn’t off as long as we’d like, but it’s a step in the right direction!
Sunday, June 19, 2011
Bella surprised us all during speech. Not even half way into it, she started signing “sleep, “sleep”, “sleep”, “sleep”, “sleep”, then “bed”, “bed”, “bed.” OK, Bella. We finished therapy right there and she took a nap. We didn’t even know she knew bed. She LOVES Signing Time, and she watches them all the time. I guess she is getting more out of them than I give her credit for!
Well, that nap should have been a clue for me that she was headed to sick. She was sick for several days. Her highest spike was at 103.9, and for someone’s whose baseline is 95 – that’s a pretty good temp. We ended up with every test imaginable – CBC, chem 7, lytes, x-rays, trach aspirate, strep, throat cultures, viral cultures. So far it looks viral. She has been miserable – and there is only one person in the world that she wants. That person is a little bit tired at the moment. The fevers are gone, but the crabbiness and the O2 is hanging around. I think we are headed to well again. Thank goodness.
Tuesday, June 14, 2011
Sunday, June 5, 2011
Hanging out with the family:
And then Tuesday came. We still don’t know why or how, but her belly was distended and she was so uncomfortable. We did end up downtown at TCH for x-rays. The ER doc and I read her chest x-ray together. I reassured her that no, she didn’t have pneumonia – she just has atelectasis. She said OK, but was withholding her judgment until the radiologist read her film. Yeah, for us, the radiologist agreed with me (otherwise, it’s upstairs – ick!). Abdomen x-rays I’m not as familiar with, but even I could see that her bowels were distended and full of air. At least there was no perforations or obstructions. So we went home. She just has to pass all that gas. Poor thing.
While we were waiting, we finally caught her doing her “So Cute!” on film. We say, “so cute” and she puts her little hands under her face and grins. It’s so funny!
Friday we saw Cardiology. We used her ECHO from Easter and it looks about the same. We used her x-rays from the ER which are her baseline. We talked about her chronically low BP and the low hear rate when she is sleeping. They are really too low for someone her age, but with everything she is on, she is good. She was also rigged up with a 24 hour heart monitor. We always get alarms when we are hooked up at the hospital, but they don’t seem to last very long. So we don’t worry too much. We are just getting a good picture of her heart function. Her valves seem to be behaving – good. Her mitral valve is misshapen, it has a cleft, but it is behaving. I asked her whether or not that should be on my worry list (because I had crossed it off a while ago). She said that the longer it goes on behaving, the better (love the obvious!). Sometimes they will act up when the kids become teenagers. So we continue to monitor and hope that all stays happy in there. Her PH pressures were pretty good for her.
Silly girl is talking to her reflection! She entertained herself for a really long time doing this. One thing she doesn’t suffer from is a low self-esteem!
I was talking to our nurse after the appointment. Bella is doing so well that I want to cross things off my worry list. Drop a few specialists, you know? But really she is more like a Diabetic that has her insulin regimen perfectly figured out. The diabetic is still diabetic, just doing well on all the proper medications. That is where Bella is. I, for one, am grateful for all the proper medications!
She, of course, pulled all of her leads off later that day. We goggled how to put them back on! Thank goodness for the internet!
Saturday – we pushed it and she got 30 minutes off the vent. She loved the freedom.
These are from today – watching a new Signing Time (totally engrossed!) And trying to comb her hair after her bath – so smart!