Still in PICU

 

Nicole is still in PICU.  We are still chasing fevers.  We do not know why she is still getting fevers.  Her labs for the line infections all come back negative.  Her virus has also cleared up.  There is nothing obvious for her to be having fevers.  Late this afternoon (10-16-14) they took her off the iv heart medication and put her on oral medication.  The heart is the obvious reason Nicole is still in PICU.  We will see how she does through the night, and maybe tomorrow Nicole will go back up to ICS unit.  However, they have been saying that maybe tomorrow she will be up on the ICS unit for the past two days and she is still in PICU.  During this journey I have learned nothing is ever solid until it is done. 

Nicole also had a CT scan to see if there was any GVHD going on they could see.  Unfortunately, the CT scan wasn't too revealing.  The bone marrow team would like for Nicole to have a scope of her gut tomorrow for more information. 

At this point we have no solid answers to what is really going on.  The bone marrow team is doing all they can to find answers.  I have a feeling that they are perplexed on what is going on with Nicole.  Today I have been reading a talk by Elder Dieter F. Uchtdorf  "Continue in Patience".  In the talk there is a section on waiting "the Lords way and time".  Elder Uchtdorf teaches:  "The children of Israel waited 40 years in the wilderness before they could enter the promised land. Jacob waited 7 long years for Rachel. The Jews waited 70 years in Babylon before they could return to rebuild the temple. The Nephites waited for a sign of Christ’s birth, even knowing that if the sign did not come, they would perish. Joseph Smith’s trials in Liberty Jail caused even the prophet of God to wonder, “How long?”   ^{(D&C 121:2)}  

In each case, Heavenly Father had a purpose in requiring that His children wait.

Every one of us is called to wait in our own way. We wait for answers to prayers. We wait for things which at the time may appear so right and so good to us that we can’t possibly imagine why Heavenly Father would delay the answer."  He shares what President Young taught when he couldn't comprehend something he would pray:  “Give me patience to wait until I can understand it for myself.” (https://www.lds.org/general-conference/2010/04/continue-in-patience?lang=eng#5-PD50021388_000_025)

 

I would love for all the answers to be known now.  But for now we wait patiently upon the Lord.  I know that He is in charge.  He is the details of our lives.  He is guiding and directing the Bone Marrow Team.  I know this to be true!

Still struggling to get Nicole to smile.  She still refuses to look at the camera.
I am sure she is thinking "mom I feel like garbage why are you documenting this?"

Kermie is getting some tough competition in PICU with Bingo prizes,
but when it came to needing support she still wants her BBF Kermie. 

Getting a little bit of life and playing with stickers.  Still no smiles though.

Trying to keep her fever down with ice packs.