Daley Ponderings

We have lots of good news to report.

Grace has been improving the last couple of days.  Her abdomen measured 53.5 cm, the smallest it has been in weeks.  They have changed her cyclosporin from IV to NG (nasogastric) which is a step towards getting ready to be discharged.  The dosage for cyclosporin is changed based on regular lab draws, and the medicine absorbed changes based on the method of administration, so I imagine that is why they are changing this one to NG first.  All meds will need to be changed to NG before we can leave.

Her IV nutrition has been turned off, and she is back on NG feeds, kind of like baby formula.  We learned today that the IV nutrition is harder on the liver than the formula, so it is good to get off as soon as she can tolerate it.  She has been vomitting more than she has been, though it turns out her Ativan was accidentally stopped on Sunday.  The nurse said that sometimes meds are prescribed for a certain number of days, and so sometimes they get turned off automatically without anyone realizing it, though she also said that typically they would taper down the meds, so perhaps that is the reason for his vomitting.  There are lots of variables, she is moving more, she started drinking a little (no eating yet), her formula, etc. so it is hard to know what the cause of the vomitting is.

She has started going to the bathroom again! - parents at the hospital get excited about these sorts of things...

She hasn't asked to go to the playroom yet, but Heather did bring her out to rounds the last couple days.  Her nurse tonight hadn't seen her in a couple days and was quite happy to see how well she is doing.

She has a hard time going to sleep tonight - she slept a few hours earlier this evening, but now has been "reading" her book via the light from the oxygen probe.

It seems like there are other things as well, but I can't think of them right now. Oh, if we haven't announced it before, we have raised $1,800 for David's House so far!

The main thing to pray for is for her VOD (veno-occlusive disease), her liver is basically clogged up and causing fluid to backup and leak everywhere in her abdomen.  Her doctor says she would hope that it will heal itself in maybe a week, and should be before two weeks.