Hannah saturday

I took this pic on friday when they finally took Hannah off the vent.  She was moved to the rehab unit Wed afternoon ( this is where we always are when she is in the hospital, all the trached and vented kids come here)  They finally got approval for her to get up in her chair too...we had to move the headrest up about 3 inches!  She looks good in her chair as you can see.
  She is still getting dialysis 3 days a week for 3 hours.  They are cathing her every 8 hours and are getting about 100 to 150cc each time.  That's much better but she still has a ways to go.  When we cath her nornally we get between 100 and 500cc depending on how wet her diapers are...she is not having any wet diapers right now.  the nurse said overnight she had a poopy diaper and wet and only got 50cc...not sure about that since she hasn't wet any other times.   The dialysis is not going well, her catheter is in her groin and is very positional, so if she just moves a little, it alarms.  The bms are getting in the edges of the dressing that holds the dialysis catheter in place.  She had been having blood pressure drops and seizures during the dialysis but friday that was better.  Her weight is slowly going down too.
  She started having large antibiotic diarhea yesterday, she is on a strong antibiotic for a UTI.

 She got a G/J tube yesterday.  It looks the same as her gtube, just has two ports on it.  Here is a good explanation of a G/J  tube on a blog that a mother wrote  G/J tube This will help give her tummy and pancreas a rest to heal.  They weaned her off the TPN today and she is up to a rate of 40cc an hour continuous on the Jtube.
 I asked the hospitalist pediatrician how long we will be here and she thinks it may be two weeks. I think it all depends on how she does each day.
  Sorry it too so long to update.  I had to run home two days in a row so my week has been really messed up.  I have been having trouble with a crown on a back tooth for a while, after Jonas was born I went to the dentist and she said it had slipped, so she put it back.  She also put a temp crown on another tooth on the bottom left.  wed, our old dentist (takes our dental insurance again) fit me in so he could look at the crown.  It hadn't slipped this time, there was a fracture in it and a very deep root had gone bad causing a very bad infection.  He finally ended up pulling that tooth but I couldn't  eat on that side for a couple days. I knew that as going to be  a problem.  The other dentist office called while I was getting my tooth pulled and left a message that the crown was in.  I called her right back to see if she could do it while I was that close but she had already left for the day :(  so that night, the temp crown came out and I had to run home again on thurs to get it..thankfully that is done and I am feeling a lot better.  Wed, Hannah's home nurse Mary came and sat with her while I was gone.  Thurs my sister in law Pam came to watch her but we got back here only about an hour after she did, I didn't want to be gone too long, it's too important for me to find out what the drs are saying right now.  I don't like leaving Hannah alone long in the hospital, but I don't think anyone else can understand how important that is unless they have had a child in the hospital before.  It's hard enough leaving her to go sleep at the r mcd house.  I usually get here about 8am leave for dinner at 5:30, come back and stay til about 9.  I like her to know someone is here.  she is rarely out of my sight even at home.
Here are some more pics from this week.

This one is before we move the headrest.  And a warning this next pic I took friday afternoon of he incision.  It looks really good.  I forgot to get one the first time he took it off.