Wednesday, December 22, 2010

5C16- rash day 6: Mom's renewal.

Mom is like a geode....with love <3
Yesterday was hard, even by a rock's standard.
This rock was honestly curled up in the bathroom corner sobbing and asking god....why?
 why oh why.
Even rocks can break.
But you know what? The best rocks break open, only to reveal beautiful treasured crystals never seen by another humans eye.
Mom found her crystals, just when I needed them the most.  Prayers answered.

Sage's rash got so bad it was bleeding and it hurt him to just tough him.  His nebulizer mask strap made big purple blood blisters on his face and ears.  Every time he scratched that itchy rash, more purple bruising and blood.  We sat in the cool bath, we turned down thew temp to 65 degrees and we snuggled.  I did every possible thing I could.  He was never in any pain.

Mom took control in the morning during doctors rounds and insisted on going in a more pro-active direction and to please start running steroids, right now.  After a quick confrence with his team, they were back in the room in less than 30 minutes starting the methylPrednisolone, double 46 mg (a huge dose) to push the rash into submission, regarless of the risk of seriously complicating a viral infection.  At that point, I would take my chances.  It was the right thing to do.

CF style breakfast was served.  Sage's "usual"  2 extra huge pancakes, 4 pats of butter, 8 slices of bacon and 5 sausage links.  He eats almost all of it.
First steroid dose @ 11am the flareup redness of the rash went down by 5%....which was enough to prevent the bleeding and bruising.  Thank God.
Second dose @ 5pm tonight and there is no change in the condition of the rash.  I did notice it flares up, then subsides, so that's a positive step as well.
 I don't thing it's getting worse.  We will take any little win right now.

Rash, day 6 when it's submitting.  This is the best it's looked
The plan is to treat Sage's condition like Dress Syndrome.  It fooled 3 of the leading allergists so far, lets see who else it fools.  Not Mom, that's for sure.  None of the tests from yesterday are back yet, so it's a waiting game for those.  He will be on IV steroids every 6 hours around the clock until (hopefully) the rash dies down.  If the docs can decrease the dose and the rash gets much better, they will send him home on oral steroids for a week, then he will have to come back when the rash is totally gone, re-admit him to go back on the antibiotics...cautiously, one by one.  Remember that nasty AFB infection?  Yeah, we still have to treat that when all of this crazy is done.
If the steroids don't effect the rash dramatically, all bets are off and we go to plan C.
(There is no plan C yet)

Today Sage took a nap (side effects of the steroids...Sage lives in opposite land), played in his beloved playroom for 2 hours, Got a new Iron Man action figure from one of the nurses, had a bath, another PICC dressing change and went to sleep....early (7:30).  Something is happening in his body.  Glad he is sleeping it off.  This gives mom a chance to watch TV, do laundry and have some quiet time.  Thank You Nannie, Mal, and Nick for the super awesome Spiderman balloon and the toys.  Sage adores it! Agenda for tomorrow...test results, playroom, painting spiderman, more steroids, praying for improvement.  No owie procedures scheduled.  Whew.

Rash Day 6 conquered.  Super Sage put up a super fight.  Another day in an unfair battle,  Won.
We will see what tomorrow brings.  One hour, one day, one fight at a time.

xoxo  Mommy


  1. <3 Hugs...that last pic brings tears to my eyes. What a sweet heart and trooper...again, I so wish I could be there. Thinking of you lots, and praying lots. Love and hugs to you all!!!!

  2. Hooray for Super Sage and his Super Mom! They are fighting a winning battle. I just feel it!!

  3. I am so grateful for the encouraging news! Everyone please keep the prayers going for Sage. Prayers are more powerful than any rash or bacteria. Yippee Danielle for being so strong and taking charge! Have a good night. Sent with love and well wishes. Janice

  4. Just take care of Paw Paw's little buddy. There are a lot of prayers going out for Sage and Mom. He is in my thoughts all the time.
    I know it's tough being in the hospital for Christmas. But what a Christmas presant it would be to see the rash gone,the antibiotics working, and Sage running around again. Love!
    Paw Paw.