Thursday, March 29, 2012


Check out this fabulous article on Shelby's awesome classmates at Ralston!   Way to go Mrs. Messner's class for organizing this fundraiser and way to go Roadrunners on supporting this SO much!  Shelby only attended school there from August - November, but she sure made some great friends.  We cannot wait for her to go back.  Unfortunately, at this rate, she will probably not get medical clearance (even if the transplant were to happen today) to re-join her class this school year.  She will have to wait until she's in 5th grade :-( 

There are many upcoming fundraisers.  Watch here closely for them.

Shelby's O2 level really stinks.  Monday home health delivered a concentrator that goes up to 10 liters; our other one only went to 5L.  Her pulmonologist said the highest he wants her on here at home is 6L.  If we are running it at 6L, then she needs to be admitted.  That is, 6L to keep her sats at a minimum of 92%.  Guess what?  We're running her at 5.5-6L!  I put in a call to all the nurses today saying we're not continuously at 6L, but it is sure hard to have her in just the right position, doing hardly anything, breathing just right (with her mouth closed) to maintain her at 92%.  When she's sleeping we can turn her down to 5L and she sats 95%+.  She has good spurts of her sats staying good and then bad ones.  (I am only referring to her sats while she's in bed or sitting on the couch.  We won't even look at the low 70's she dips to using the bathroom.  Ugh.)  So...I won't be surprised if I get a call in a bit saying they want her admitted.  We're torn.  Being home is very nice.  Hard, hard work, but nice to wake up to your 4-year-old about 3 inches from your face.  Nice to see your beautiful tree in bloom.  To see the neighbors, to walk around your block, sit on your couch, etc.  To wait here.  BUT, it may not be the best for Shelby's health at this point.  While nothing is acutely wrong (thank God!) she is sliding downhill.  Her sats only stay good if she is laying in bed, basically doing nothing.  Not good.

My heart was totally broken this morning.  Avery was just having a rough time.  Mad at Mommy for saying she needed to wear long pants today, you know, "normal" 4-year-old stuff.  But, Daddy's tickle finger was not bringing her out of her funk.  So I scooped her up and we went to my room and I asked her if not being able to play with Shelby was making her sad.  And the tears came.  And came. Poor thing.  We had a "good" cry together.  She just wants "her" Shelby back.  The one that would play outside with her.  HER Shelby.  She misses her so.  She just wants her sister to feel better.  Me, too, baby.  Me, too.  

(By the way, potential donor #5 is getting worked up today at Northwestern.  Let's pray for quick results.)

3:25 p.m. 
Got word from one of the nurses that we can stay home until she needs 6L continuously for 1/2 a day.  Also, Dr. Alonso is writing another letter tonight to UNOS to ask that her PELD be moved up to a 40.  If they get denied that, then they'll turn around right away and ask for a 38.  The surgeons are watching closely for our person being worked up today's results.


Anonymous said...

I so wish I could help! It breaks my heart too! Nicole s

Anonymous said...

Praying with all I have. Love you.

Anonymous said...

^^^^ That was me, sorry. xoxo

Melissa and D