Status Update

Reilly was released from Children's on Tuesday, Jan. 10 and has been doing fairly well since.  She is currently VERY congested as a cold has made its rounds through our house, and seems to be the culprit.  Other than that, things have been quiet and subdued. 

As many of you know, Reilly's Aunt Holly passed away on January 8, 2012 due to complications from Cystic Fibrosis.  We have had a lot on our plates with this profound loss and with the Polka Dots & Pigtails Benefit all at the same time.  The benefit was a HUGE success and we extend our deepest gratitude and sincere thanks to all who donated - prizes, gift cards, money, time, and anything else - in helping to meet our goal and exceeding our expectations. 

There has been a set back in the situation with Reilly's surgery with the insurance and the fee schedule and negotiations for payment.  I guess it is all about the money now.  Unless and until an agreement is reached, her surgery will be postponed.  I have spent countless hours on the phone with Louisiana Medicaid and Children's Memorial Hospital and Dr. Noel trying to figure this out.  The communication breakdown has been resolved, but that still doesn't fix our problem.  I am examining other avenues and waiting (rather impatiently) for something to happen.   

Please pray this situation resolves quickly and continue to lift Reilly and our family up in prayer. 

10th Scope / Banding

Reilly had another scope and banding today.  Dr. Noel banded three spots in her esophagus and is watching another.  She has still has extensive gastric varices.   Dr. Noel and I, were surprised that she had such significant development after such a good scope last time and such good bloodwork on Friday.  Due to our family's recent loss, the plan was originally to let Reilly go home and we would monitor her care at home, where under normal conditions she would have been admitted overnight.  In short stay, she was unable to hold down any fluids.  After the third episode, it was determined that Reilly needed to stay tonight for medication, observation and safety reasons because of the bleed risk.  So, here we are, disappointed at LSU's performance tonight, but pleased with the fact that Reilly has presently kept about 6 oz of apple juice down for over 4 hours.  She's had a few gagging episodes, but no expelling, so that's good.  I will update tomorrow or the next day with more information.  As it stands right now, we will be headed home sometime in the morning.  Thanks again for all of your thoughts and prayers. 

Friday's Bloodwork

Reilly had bloodwork done on Friday and for the most part it was good.  She is scheduled for another scope on Monday, which will hopefully be the last scope for a while, once she has her surgery.  We are doing our best to prepare, and are still waiting on one final piece of paperwork to be completed before we are completely set to go forward.

Please continue to keep our family in your prayers.

Also, don't forget ... POLKA DOTS & PIGTAILS BENEFIT ... January 14, 2012@7pm.  Please join us.  We have tons of prizes and would love to see you there.