Day 29

     I had wondered why they have kids on steroids for 28 days...why 28, not lets say 30 days?...well, I think I know the answer.  It is because on day 28, after 56 doses of daily steroids, your child is completely maxed out.  I don't think a child could endure one more day!  Last night was the worst night yet.  I did not even close my eyes once all night.  She was like a mad woman all night - I don't know how else to describe it - and I don't even want to try.  At 3:15 a.m. (after 4 hours of her screaming, crying, etc) Scott and I ended up driving her in the car until 6:00 a.m. (we tried stopping a few times, thinking she was asleep, only to have her start screaming and thrashing again).  At 6:00 a.m I got in the shower to begin the day, Katie managed to finally fall asleep, only to have me wake her at 6:30 a.m. to get her ready for her procedures today.
     Honestly.  I don't have one good thing to say about today.  I am beyond frustrated at the lack of competency.  I am ANGRY.  Please ignore everything I wrote yesterday about Katie's prognosis (possible low risk, treatment and survival rate).  Apparently I had that all wrong...oh, but not because I misunderstood.  Apparently our doctor misunderstood the other doctor, or the other doctor misunderstood our doctor, or one of them, or both of them, have absolutely no idea what they are talking about!  Which doctor is wrong?  Which doctor is right?  What treatment plan is available to Katie?  Who knows!?  Apparently they don't!  I am sooo angry!  We switched to PCH because we were told certain things.  We were reassured about certain things.  We have been given a treatment plan (and have repeatedly gone over it in detail with the doctor the last 3 weeks).  Now today the other doctor said that treatment plan (low risk) isn't even an option for Katie.  I am told our doctor misunderstood or doesn't understand...or something.  Our doctor's nurse calls and tells me the other doctor misunderstood or doesn't understand...or something.  We are told our doctor will call us...no call. 
     My brother wants to assure me that they all want what is best for Katie (and he is right).  However, it is clear, very clear, one of the doctors is very confused.  And that is confusing to me, because I was told they (the doctors) had consulted with each other and they had agreed upon Katie's treatment plan....but apparently not!  So, to sum it all up, we had been repeatedly told (assured) that, WORST case scenario, Katie would get the Standard Treatment Plan - now, today I am told that treatment plan is our BEST case scenario.  We are now waiting on a test to see if she is High Risk (which our doctor had told us wasn't even a possibility or concern for us - but now suddenly today it is).  WHAT!?  So, yes, frustrated, angry.  ---But my brother is right.  We will get this figured out, and whatever the treatment plan is, it is.  BUT my confidence and trust is GREATLY shaken! WHO do I believe?  WHO do I trust...with my daughters life?  I feel so completely helpless...with this and everything that is happening.  My daughter is hurting, I can't take her pain away.  She is sick, I can't heal her.  I can't seem to comfort her or help her...and every doctor I turn to, to help her...are they helping?  Do they even know what they are doing?  And yet, I am handing them my daughter and asking them to fix her.  I am trusting them, because I have no other option, but no doctor has earned my trust or confidence.  I am at a complete loss! 
     Today I am glad for a sister-in-law who reminded me tonight about a scripture in Mosiah 18:8-9. "...and now, as ye are desirous to come into the fold of God, and to be called his people, and are willing to bear one another's burdens, that they may be light;
"Yea, and are willing to mourn with those that mourn; yea, and comfort those that stand in need of comfort, and to stand as witnesses of God at all times and in all things, and in all places that ye may be in, even until death, that ye may be redeemed of God..."  My sister-in-law quoted this to me tonight, and tenderly said how she felt these words, and how she wished she could just take away a measure of Katie's pain, or my pain.  I want her to know that she and my brother have done just that!  By their being here and helping us through this, they have comforted those that stand in need of comfort, and mourned with those that mourn...and listened to a raging mother that only wants to help and protect her daughter.  I thank them for their service to us.  We thank all of you as well for your prayers and acts of service.  We are grateful.  Tomorrow is a new day and we will meet it head on - whatever the day brings.