Wednesday, January 11, 2012

Way behind on this

Some blogger I am!  I have over a week to catch up on!  Sorry!!!

OK.  There's so many pics, but I am going to pick a select few for each day....
Sunday, January 1st - Shelby and Breandan (forgot to put this with the other ones from Adele, Breandan & Leann's visit)
Monday, January 2nd - Shelby watching TV playing hospital bingo - SHE WON!!!
Wednesday, January 4th - Shelby lookin' pretty with 2 (more!) new stuffed animal friends.  On this day she had an IV put in and the allergist did a test to see if she could handle (without a reaction) the antibiotic they give during transplant.  It is in one of the families of meds that she is allergic to, but all was o.k. with this one.  Yay!   Mommy was a bit on-edge during it.  All's well, though. :-)
Thursday, January 5th - Alise, a friend of a friend of a friend (really, something like that!) came to the hospital to trim up our hair.  She was fabulous!
Later, Kayla, a girl from my hometown who's family I was very close with (my brother and I got to have her grandparent's as "neighbor grandparents" before any of her siblings or cousins were born...and I actually babysat her, her sister and her brother :-O) came to visit in the evening.  She was a ton of fun and game for just about anything.  We really enjoyed her visit!

Friday, January 5th - Scott came into the city the night before to help me sort out some things.  During rounds Thursday the attending announced Shelby should go home.  I was very shocked as NO ONE had mentioned this at all in the 20 days we had been there.  Naturally I had had plenty of questions about this change of course.  Before he left the room Shelby asked a question and he made a rude remark to her.  I was NOT happy.  I requested a care conference with her primary hepatologist.  That did happen, but the particular doctor that made the rude remark was there until he treated me poorly and raised his voice.  At that point I said the discussion would not continue with him present.  He left the room.  I could go on and on about him, but I won't here.

This left a ton for Scott and I to talk about.  The consensus was that they had observed Shelby for quite some time, they were not concerned of anything acutely happening to her and ultimately whatever we chose (to stay inpatient, move to the transplant housing-Kohl's House, or go home) they fully supported.  We were leaning toward staying inpatient as that is a big reason why she has stayed so stable.  She is limited in what she can do and has a million eyes on her.  There was a change, though, in some of our support at home and we no longer have some people to help that said they would, so we felt that we needed to work towards getting home.  Yesterday we moved Shelby to Kohl's House.  Scott came in to help out and has to be back home to work Thursday-Saturday nights.  Then he starts school on Tuesday.  Shelby has to be seen in clinic here Tuesday afternoon.  Where we go from here?  We don't know.  We pray she stays stable.  We pray a liver comes any moment.  We pray that when/if we decide to go home and wait that we can line up enough help as Shelby will tie up most of my time, yet I will have two other children to attend to.  My parents are willing to bend over backwards to help.  We just don't want to burn them out because this is a long-haul.  Please, say a prayer (or two) for Scott and I to have faith in our choices we make for Shelby's well-being and health.  Not to sound like we're not thinking of Avery and Riley, but their life is not at risk here.  Shelby's is.  Plain and simple.

That is why its taken me so long to get this blog update done.  First of all I was behind a few days and then all that came up.  I heard today from a friend that she is schedule to be worked up tomorrow at Northwestern to be Shelby's donor.  Please pray for her.  This is actually the second person that Northwestern has screen besides myself.  I know there's many others out there, too, with donor packets in hand ready to send them off should this donor not work out.

Enjoy more random pics from last week! 
Absolutely LOVE THIS!  Papa and my girls!

Papa, Grammie, Avery and Shelby playing Cooties.

Shelby, Frankie and Annika (3x liver transplant).  They were in town and came to visit.  The girls giggled and watched YouTube.  It was wonderful.  And, oh yeah, I got to visit with their Mom, Moreena.  :-)
Shelby and one of the Rainbow (therapy) dogs.

Shelby sporting her new headband from Nicole, one of Scott's nursing classmates.

Nicole, Shelby (making a weird face) and Nicole's Mom, Lynette.

Getting her bed at Kohl's House all ready.

Shelby, Noelle (fabulously funny and wonderful) and Jack (cute as can be - he had a liver transplant and Daddy was the living donor).  Noelle brought Shelby an awesome gift - a pink dog-bone shaped poop bag dispenser with pink baggies with paw prints on them!  Shelby will be picking up after her puppy in style!!!

One last visit from the clowns.  The "nurse" clown happens to be a friend of Noelle in the above picture.  Small world!

About the 50th and final trip to take our stuff over to Kohl's House.  Is he a Dad of girls or what?!?  Like his big pink teddy bear and bright pink bag?  That's my guy :-)

Shelby all ready to go.

The note she left for the nurses.

We had wonderful nurses.  Leah happened to be Shelby's nurse the past few days.  Leah rocks!

Angela, one of the unit secretaries.  She was just fabulous!  She would personally deliver stuff to Shelby's room just so she could come hang out in the cool room. 

All comfy in her bed at Kohl's House!

1 comment:

Kayla said...

Love the pictures! Looking forward to seeing you both again on Tuesday!