Tuesday, August 21, 2012

Goals for home

Yesterday we had a "family meeting" with the Cardiologist, NP and the new PICU attending.  This week was going to be g-tube week, but I have been expressing my concern for her heart surgeon being out of town because just in case something were to go wrong (which I do not anticipate, but anything can happen).  Everyone seemed more than understanding and it is no rush or no big deal to wait for him to get back.  So, after she is healed from the g-tube, her next goal is to slowly get her belly to tolerate a bolus feed because right now she is on continuous.  That is the most ideal for "home" is to get her to a point where I can try to feed her orally, and whatever is left that she can not handle, will go into the feeding pump.  Continuous feeds will remain for overnight. The next goal after this is achieved, is to wean her O2 support.  Why not do it all at once?  Well, Cecilia has proven to us on multiple occasions that she does not like and can not handle too many changes at once.  They think this will be realistically a 2-3 week process to get her to a stable and comfortable place for discharge.  So I asked, "well what happens if she can not reach these goals", her main Dr. said that one thing on the back of their minds is her moderate tricuspid valve regurgitation.  Cecilia may need an early Glenn.  Her leak was very little before Norwood, but once there was more pressure on the right ventricle, it increased the TVR.  She believes that the Glenn anatomy will improve this valve leak, and Karl brought up that the surgeon told him that he could even repair this leak surgically.  So, basically if in a month from now Cecilia is not able to reach her goals for a discharge, we may have to talk about her stage 2 reconstruction sooner than I would have prepared for.  I am still hopeful that she can make it to late fall until we will be needing to have that conversation, and that she will experience a little bit of "normal" home life in between.  Because did I mention How amazing Cecilia looks everyday!!

Thursday afternoon is Open House for my kids school!!  I am excited because I know who Julia's teacher is, but I do not know who Gina's is...and I have a conference with Julia's teacher, but not for Gina's.  I think this is the only way I can meet Gina's teacher before school begins next week, and I have to let her know about our personal situation.  If Cecilia does come home, I need the school to cooperate with me on giving me a "heads up" when there are sick kids in the classroom.  This way I can take extra precautions to isolate Cecilia from a virus.  Gina's first day is the 27th, and Julia has a staggered day later in the week.