Progress takes time

Sorry for the lack of updates.  Things continue to be busy, and of course we are all worn out...to tired to write.

Yesterday....Sydney sat up, walked, did physical therapy, started to smile and talk more. She started to drink, but still no eating.  Sydney was on and off of her O2.  She still had a few episode of break through pain, which was very distressful to see. Even though there was break through pain, it was better controlled.  Josie and I kept her up, busyand moving all day. She dumped a lot of fluid from her chest tube making it remain for at least another day.  The doctors said this was normal for a child that has had 4 open chest surgeries.  Sydney has been having some itching issues.  Her chest incision was very irritated, and her face would get red, itchy and splotchy.   One mystery was solved, when Dr G's Nurse practitioner did a dressing change.  The area around Sydney's incision was red and irritated....not infected, thank goodness.  We believe the tape was the cause, and this was removed so it can heal.

Today.....Sydney pain issues continue to get better.  Dr M (EP doc--pacemaker) came in and worked on Sydney's pacemaker.  Sydney's heart rate is too high for the pacemaker to help Syd get the "atrial kick" it needs.  So she was put on a beta blocker this evening, that will hopefully help.  Once this take effect, they can adjust the pacemaker some more.  Sydney continues to have a strange rash come and go on her face.  At one point, it caused a great deal of itching, redness, it was hot to the touch.  We even thought Syd might have a "squeak" to her breathing.  The doctors have seen the rash and they think it is an allergy. What she may be allergic too is unclear, but they do not think Syd is in distress.  Frustrating...I know, but we will keep trying to find the answers.  Sydney will be finishing her last dose of antibiotics tonight, and will be off of her IV Motrin for pain.  Pain management will be different tomorrow, so I hope she will be comfortable. S

This evening...she continues to progress well.  They are treating Syd for thrush...poor thing, but it seems to be helping.  She said "peacock" tonight for the first time after surgery.  This is her favorite word and if she likes you....you get a shout out from her...."peacock!!"...and you know you are in...she likes you!.  Very cute and silly.  That's my girl! Syd did get her chest tube out tonight, and the words discharge has been brought up again....maybe Sunday?  We all want to go home so bad.  We miss Aubrey like crazy.  Aubrey has been feeling sad, and she evening saw the school counselor the other day,  She talked about her feelings, and drew Sydney a picture.  I need and want my girls back together.  With that said, I want to make sure that Sydney is well enough to go home. I can not watch her crumble at home any more. I need to make sure.  She is still holding a huge amount of fluid, so her lasix has been increased and another diuretic has been added too.  Sydney's body has been stressed, and needs time to recover.  I know this process will continue at home, but I feel we still have a little more work to do...to make sure we do not have anymore admissions or ER visits.

Thanks as always for checking in!  Thanks again for all of the love and support.

Christy