Day 18 - Sunday January 1, 2012

So, yesterday I told Bridgett that she should remember sign language so that she can communicate with us. Later on Arrianne said Bridgett I love you and Bridgett put her hands up like I love you, but a little sloppy so Arrianne helped her along. When Amy her cousin came Bridgett smiled and Amy said that Bridgett did I love you for her.  Today Jenn asked her if she could do the sign for I love you and Bridgett did it again!  Also, when uncle Justin came over to visit he was clasping her hand and snapped his fingers and Bridgett snapped back.  For quite a while she did that.  It's exciting to have her interact with us!  I love how she will hold my hands, even clasping them interlocking.  She will rub or squeeze my hand too.  When rehab came today and stood her up she started coughing (as usual) but really coughed so much more because she now has an infection in her lungs.  Stuff started coming out of her mouth and she groped around and grabbed Carleton's (rehab guy) sleeve and wiped her mouth!  He's such a nice guy and good sport and said way to go Bridgett. They handed her a paper towel she used that instead.  It was really amazing.  The second time they had her up she walked like 7 steps, maybe more.  She does really well with her left foot and has to concentrate to use the right foot.  It's hard to understand what Bridgett's awareness is at this point.  The doctor said she is like in a deep sleep and trying to wake up.  The nurse said she is in a dream like state.  They have been talking to us about putting Bridgett in an LTAC (Long Term Acute Care).  I haven't discussed it much because it seems upsetting, like we are putting her in a nursing home (even though it's not).  However, in the past few days she has progressed so much that they are now thinking that she can probably go straight to inpatient rehab.  We will know by Tuesday I think. We have also been discussing moving from the feeding tube situation to a peg.  Today the doctor said let's just wait a bit.  She might be able to swallow soon.  Once they do a peg, they have to leave it in for 6 weeks, even if you don't need it anymore. He said let's just see over the next couple of day.  We had been having problems with the feeding tube. Friday was a feeding tube nightmare.  The tube was originally in the stomach.  Then the stomach wasn't working correctly and they had to advance it to the bowel.  When she got the trach tube the doctor removed it from her mouth and put it in her nose, but only advanced it to stomach, but this time she has tolerated it ok.  However, it had come up a little and they were worried it was coming out of the stomach, so they asked the nurse to advance to the bowel again.  The nurse removed the tube (I don't know why they couldn't just advance it) and tried to get it down.  They don't use any sedation and she choked and gagged and turned red and it was awful.  After getting it down, it was in the wrong place and she pulled it out and tried again.  Again with the choking and gagging and it was in the wrong place a second time.  After a third try the nurse said we'll give her a little break and left.  Bridgett had been choking and gagging for like 30 min.  I went and asked the charge nurse to help.  She came in and helped out.  All together it took like an hour and it was awful.  Then Saturday the tube got plugged up. They had to put the guide wire back down to try to unkink it.  That night it plugged up again.  That nurse said that using the guide wire could possibly poke through the tube and perforate something, so she used warm water flushes.  That was worrisome as well, as they are keeping Bridgett in a dehydrated state (to control swelling in the brain) and the extra fluid concerned me.  Today it clogged again!  This nurse is 23 years old and she tried the warm water flushes, then decided to try coke in the tube.  That seems to have done the trick for now.  Hopefully we can ride it through and not that be the deciding factor regarding the tube or peg.  Bridgett had her eyes open most of the day and did very little resting.  Hopefully she is will still and restful tonight.  When she is awake we are holding her hands or keeping them busy so she won't pull out the tubes or wires.  Otherwise, they would have to restrain her and we don't want that.