I know, She's Cute, Right?

11/2/2010

I can't decide if I haven't updated the blog for a week because we're so.dang.busy. or because absolutely.nothing.is.happening.

It's either one.

Charlotte's had three doctor appointments since she was discharged a week ago. Everyone agrees that she looks pretty great. I think they are correct.


Here's a run-down of her latest stats:

Weight: 6.4 kilos (14 pounds even)

Length: 58.5 cm (23 inches)

Heart: Her heart rate is finally coming down to a "normal" range (I say this, even though she's been elevated all day... hopefully I'm not jinxing this). Her heart rate while sleeping is usually somewhere around 100-120 and when awake, her heart rate is sitting at 150. We believe that being back on the diuretics has made breathing so.much.easier, which, in turn, has lowered her heart rate. That's the theory at least.

Lungs: She's still on 1/8 L, and is very, very happy there, so we're not playing with it. If it works for her, it works for us. We've learned our lesson. She has an appointment with the pulmonary department later this month, so we'll work with them on weaning.

GI: Charlotte's taking 99% of her feeds through the tube still, which is frustrating at times, but not unexpected. She is still on honey-thick liquids, so it must be so difficult for her to get anything out of the bottle when it is offered to her. Of course she isn't going to take anything! Sigh. It is disappointing though, that after two months of being offered a bottle, she hasn't made any significant progress. So we're starting to look to the future. Spoon feeding! We'll work with her Speech Therapist on rice cereal soon. Maybe that will offer her more oral feedback. Cross your fingers for us!

Eyes: Charlotte's eyes were examined when she was admitted to the hospital last week, and we have another follow up appointment next week to check her eyes again. They are just watching her a little more closely, as one of her eyes has started to get "stuck" on some objects. Nothing too much to worry about-- they are just being cautious.

Vocal Cords: Her stridor comes and goes, and doesn't seem to have any pattern, other than it's worse when she's sick or sleeping. She will be scoped again in December.

Meds: Her prilosec was just increased to a more weight appropriate dosage. She's also taking Aldactone, Diuril, KCl, Albuterol and Flovent. (Thank goodness for 18 hours of nursing, right?)

Early Intervention: She sees Speech Therapy for an hour and Physical Therapy for an hour each week.

And that's about it!!