Not even 48 hours later

Keyan came home from Mary Free Bed Friday evening.  She was so happy to be home and basked in the family life. Saturday was a gorgeous day that we spent lounging around in the morning and spent the afternoon by the pool.  Keyan put her feet in and laughed and laughed at the other kids jumping in and splashing Grammie.  Poppie kept filling a water gun for her and she thought is was hilarious spraying Mommy.  The seven of us ended the night having dinner at the Chinese restaurant where Keyan wheeled her little wheel chair all over the place showing off her new talent.

Unfortunately, through the night Saturday, Keyan spiked a fever that our nurse battled all night long.  We continued to monitor her in the morning but knew that we were headed back into DeVos Children’s hospital eventually.  I took her later in the afternoon where she again spiked a very high fever. They admitted us to our “home” on the 9th floor.  We were not even home for 48 hours.  We are all very devastated.   I used to pray for healing, patience, strength, and endurance.  Now, I pray for this just to stop. 

This morning it was confirmed that the cultures from both lumens of her broviac central line as well as the regular blood draw are all growing bacteria.  She is once again septic.  We will not know what bug it is until tomorrow and at that time we can put together a plan of how to manage it this time around.  She was started on some big gun IV antibiotics and we will wait for the cultures to continue to grow and show us more information.  Her body is tired, her spirit is even more so, and I am so scared that we are doing so much emotional damage.  She begs to go home, she yells for the germ bugs to go away, and she cries every time the doctors leave the room.  This NEEDS to end.  Of course, the rest of the family is in no better shape.  The other kids are suffering, my poor husband is beside himself, and my parents are living a nightmare that no grandparent should have to live.  Somehow we are all putting our feet in front of each other but that is about all we are managing.  I expressed all of this to the team of doctors this morning in tears and I believe that they are on the same page.  They know that she is suffering emotionally and the doctor said he would do everything he could to have us out of here by Friday.  At this point, we have to assume some risk to take her home but I think in the big picture, it is our only choice.  Of course, I am not getting my hopes up…there are a whole bunch of other doctors that have to sign off on it!

Anyhow, that is the story for now.  I will update again as we have further information.