Saturday, December 26, 2009

Slow Progress

Mary is making progress, slowly but surely. She is more awake every day, her face and other burns appear to be healing a little more every day, she is talking more and interacting more. But she still isn't eating well at all. So we made the decision to put the NG (feeding tube) back in again. So far it has stayed in (which is a first-the other 2 lasted an hour each!). She's getting pretty high powered feedings -1.5 calories per ml (so like 7.5 calories per tsp!) at 1.5 oz an hour (45 ml/hr). In addition they are still providing regular food for her but I no longer am force feeding her which is a relief. Since I wasn't forcing her she actually fed herself 1/2 a pudding last night! Instead of cramming food in her we play with her new toys, read books, color, snuggle and watch cartoons. Except (shh) I change the channel when she falls asleep.

The nurses here have been wonderful. Each and every one. The one we had the last 2 nights took Mary out on a field trip last night-to see a bunny and fish tanks, a bigger tree (and she got to pick another present out from under it!) then painted her nails and put a bow on the NG tube holder that we invented that looks like a headband over her head. And her dog-dog got a Christmas bow. It was a blessed day. And Santa came in the morning with the news crew so she was on TV and got 2 more presents. So far she's gotten 5 just from santa/UVA yesterday-she also got like 7 from UVA a couple days ago-a plastic garbage bag full of really nice stuff-a lot of it from Shinanagans. So yeah, she's racking in the presents! We're still in the PICU although not PICU status-she would have to come back every day for the sedation during the holidays/weekend so it was easier for them to just keep her here then move her back and forth. I've really gotten to know all the nurses her so I'm just as happy to stay here too. Plus there's a couch here and just a recliner in the regular floor so that's a plus too!

Today family is coming for a visit and I think I'm going to get out of here for a little bit. I've not been away from her for a week except for 10-15 min to eat/shower (except when she was in OR) and I think it's time to spend some time with Robert and to let the grandparents and daddy spend some time with her! I'm letting her rest now hoping that she'll be bright eyed and cute when they come! She didn't sleep super great last night-her arms are in splints when I'm not holding her to keep her from pulling out her NG tube and every time she woke up she was all mad about it. Poor pumpkin. Well, she's staring to cry so I'll go. Thanks to everyone for you love and prayers. Please continue to pray for the adhesion of the grafts, no infection and for her to want to eat. The doctors are a little worried about her continued fevers-102ish last night even with tylenol every 4 hours but so far her cultures are negative and she doesn't appear to have pneumonia based on the x ray they did yesterday (to make sure the NG tube was in the right place).

1 comment:

A. Beth said...

So glad to see today's blog. Hope the day went well and the Grandparents were able to visit and you spend time with Robert. Keep us updated. Love you dearly!!
a. Beth