Day 8, Now at Primary Childrens Hospital in SLC

Dad's Log:  Angie and I were at rounds this morning.  The concensus is that Hailey has an acute respiraotry illness in addition to a chronic lung disease; things we already knew.  We don't know much else yet at this point.  Her g-tube site has been bulgy and they were concerned that she had perforated her bowel again, but the xray they took this morning appears to have ruled that out.  Another potential issue is that her MAPCAS have narrowed.  Based on other indicators, that is not very likely at this point, but they are going to take an echocardiogram and other actions to positively rule this out.  She still has really high CO2 levels in her blood.   They are high enough that the ventilator can't measure them so they are monitoring those with regular blood labs.  All of Hailey's cultures and viral panels have come back negative so far but she has developed a fever so they are giving her some antibiotics.  Her lungs were really tight this moring and she wasn't getting very much air flow.  They doubled her albuterol and that seemed to helped.  They are getting some secretions out of her lungs.  They also found indicatios that she may be having reflux.  They are going to be doing another g-tube study and some other things to evaluate whether the refulx is a probalem.  They also seem to think she is having some apneas and will do a sleep study to see if she needs to sleep on a bi-pap at night. 

We are grateful to be getting this good care.  St. Lukes was awsome but everyone at Primary Childrens knows Hailey and her history and that is going to be very valuable right now.  Based on all the things they will be investigating, this may turn into a long stay.  And if she does have reflux, aspiratino, or apnea, that is going to change things for us when she is at home.  Hailey is doing ok for now but we are a little aprehensive to see what new issues they may discover while we are down here.