What a Frustrating Day....

I'm going to apologize up front because this update is probably going to seem quite negative.  Since updating, Reagan has done better respiratory-wise.  She was in distress on Sat. as I described before but with the measures taken she has gradually improved.  Not that this means alot to some of you, but she had already come down to a rate of 10 on the ventilator and Sat. she had to be taken back up to 40.  Since then, she has gradually weaned back down on her rate and is now back to 18.  So we are moving back in the right direction.  Sunday, another bug grew from her respiratory culture (enterobacter).  We are thankful that it is not the enterobacter that is resistant to antibiotics though. 
Today there has been alot going on with other kids in the CVICU so I feel we were short-changed a little in "rounds" this morning because the few people that rounded on Reagan couldn't answer many of my questions so I asked that they re-round with the attending, Dr. Roth.  Well, needless to say, they finally did, but it was 4:30 this afternoon so I feel like today was a wasted day due to not being able to come up with a plan and make changes for Reagan toward her progress.  Also, Reagan was started on a broad-spectrum antibiotic (meropenem) on either last Fri. or Sat.  Once we found out on Sat. that she specifically had H flu, Dr. Roth said he thought there was a more specific antibiotic to treat that.  So, Sunday, she was started on that more specific antibiotic (something that starts with a c- can't pronounce it).  And I was told she would specifically have to be on this one for 14 days per i.v.  Well, this morning I come in to find out that the fellow overnight stopped this antibiotic and restarted her on the meropenem because she spiked a fever last night.  Needless to say, I was livid that this change was made after we specifically decided she needed the other antibiotic and for a 14-day course.  Then, when our "rounds" got pushed to 4:30 this afternoon just gave me more time to brew over the change.  Just awhile ago, I finished rounding with the complete team and spoke my mind about the situation.  I said, "Just so that everyone knows where I'm coming from, each 24 hr period we sit around and don't make changes toward moving forward on Reagan's progress is another 24 hrs. our family doesn't get to be together.  It was my understanding that we were specifically on the c antibiotic for the H flu.  Yes, she spiked a fever but with Reagan sometimes she does things that don't ever amount to anything so rather than making what seems like a small change to her antibiotic based on a fever- I want changes based on facts and not assumptions from here on out because what seems like a little change now means that we have to restart our 14 day course over again on the antibiotic she should have stayed on to begin with.  Also, as far as the ventilator goes, the longer its in the more prone she is to infection and so I want to aggressively move toward extubation and not just make small changes everyday.  I want changes made every few hours based on her tolerance of the changes and get that tube out sooner than later."  They were all quite apologetic and seemingly compliant to my requests so we'll see how things go from here on out. 
Because of Reagan's fever, new blood cultures were sent and as of now (24 hrs.) nothing has grown but we have to wait until 48 hrs. to make sure.  Also, another urine culture was sent today and it has already come back negative so hopefully, we are still just fighting the H flu and enterobacter bugs in her respiratory tract.  Infectious Disease team is supposed to contacted to see if by changing back to meropenem overnight made us lose any of our time on the 14 day course we had already started.  Also, once Reagan gets extubated her central I.J. line and art line can be removed which are good because of risk of infection but that will only leave her with one p.i.v. which is going bad and may not even make it overnight.  The PICC team is going to be contacted about starting a PICC line for her to receive the antibiotics through for the remainder of the course.  Let's just continually pray that her PICC does not get infected.
Now, on to more of a positive note, I wanted to thank our next door neighbors, the Bradleys, for paying to have our yard mowed for us.  Rod and Nolan just got home last night and after two weeks of not being mowed it was in need of a good haircut.  Thank you so much for taking care of that detail for us so that Rod can focus on work, Nolan & his girls back in California. 
Also, my heart mom friend, Victoria Nelson, showed up for a surprise visit yesterday just to give me a hug and brought me lots of goodies to munch on.  Thanks Victoria for your sweet spirit!
Many of you also have sent Get Well email wishes via the Lucile Packard website.  We appreciate them all and they are hanging on Reagan's wall of support in her room.   Also, thanks to Nan & Pop for the get well card and Dora stickers for Reagan. 
Thank you all again for your continued support & prayers.  Just thought I'd share with you how important your prayers are to God:

 Prayers are Precious Jewels

"The Lord sees the good people and listens to their prayers."
1 Peter 3:12

You and I live in a loud world. To get someone's attention is no easy task.  He must be willing to set everything aside to listen: turn down the radio, turn away from the monitor, turn the corner of the page and set down the book.  When someone is willing to silence everything else so he can hear us clearly, it is a privilege.  A rare privilege, indeed.
(Your) prayers are honored (in heaven) as precious jewels.  Purified and empowered, the words rise in a delightful fragrance to our Lord...Your words do not stop until they reach the very throne of God...
Your prayers on earth activates God's power in heaven, and "God's will is done on earth as it is in heaven."....
Your prayers move God to change the world.  You may not understand the mystery of prayer.  You don't need to.  But this much is clear:  Actions in heaven begin when someone prays on earth.
                                                                               The Great House of God

Taken from Grace for the Moment by Max Lucado