Thursday, May 10, 2012

1st (of many) "liver" clinics

5:58 p.m.
Clinic went great!  Shelby probably wouldn't say so because she got her staples removed (43 total, I think), but I know her incision is feeling better with them out.  They (and me) are thrilled with her numbers; they really are fabulous.  For my LF/medical peeps:  Albumin 3.6, T. bili 1.0, D. bili .2, Alk Phos 116, ALT 35, AST 18, GGT 75, PT 13.3, PTT 26.0, INR .96, BUN 13, Creat .43, Hgb 12.6, Hct 38.2 and platelets...212 :-O WOW!  Her Prograf target range is 10-12 and it came back at 7.2, so instead of 3 mg BID, she'll take 3 mg in the a.m. and 3.5 in the p.m.  Monday she'll have labs again.  Her Methadone and Ativan weans were slowed down.  We celebrated with an ice cream cone and a nice, long 3-hour nap :-)


While everyone is thrilled with her progress, she is far from *our* Shelby.  She still has a long road ahead of her, but has already come leaps and bounds from getting extubated and not being able to raise her arm off the bed.  She does NOT have her spark, her spunk.  A lot of that is masked by meds for now and the fact that the largest organ in her body was removed and replaced with someone else's.  It can take up to 6 months to see *our* girl back.  She can only handle so much activity right now and easily becomes overwhelmed.  She is very emotional and I know that frustrates her.  As long as her liver numbers continue to do well the meds that contribute to all this will be weaned, but it will still be quite a while.  By weaned, I mean within the first year post-transplant.  Also, a lot of this will just take time.  She's a bright, vivacious 10-year-old that has just had the wind knocked out of her sails and knows all too well what is going on around her.  Parenting her right now is tough.  I want to trade places with her, but I know that is impossible.  Huge doses of patience are required.  Believe-it-or-not, I have that.  While I miss Riley and Avery terribly, I just don't know how I would devote the attention Shelby needs for her healing if I had them to take care of now, too.  I feel SO guilty for saying that...but, that's how it is now.

9:07 a.m.
Up too bright and early for what we just went through last night.  Labs done.  In a room waiting to see the "team."  Clinic is usually long...that's the word on the street.   Will update later....

8 comments:

Kass said...

Keep hanging in there. I like your "sleep is for sissies" comment - that one is true so many times in life. I just wanted you to know that I have not yet changed my ways and am still a Shelby stalker. I will miss all of the updates, but I'm so excited for the day when you have nothing new to say! :)

Joseph P. Hillenburg said...

Ben's clinics usually go pretty quickly, but I think they try to get babies out of the way first. Of course, he's also going in for Heart and not Liver.

Carolyn G said...

Good luck with the clinics! I love your attitude Shelby! Just put on a medal and rock the show. :) Stay strong missy!

Fred & Carol said...

Just remember you are on the back side of this.....clinics mean home soon!

Love you guys,
Auntie Lu

Coralee said...

Well said, my dear daughter. As long as Scott is around for some relief, I can handle the other two drama queens!!!!

Pebbles said...

@ Coralee: What a trooper you are! Managing the 2 other "drama queens" while Jen and Scott focus their efforts at the Hospital. I have 2 of those 'drama queens' myself, and I cannot IMAGINE what they would do to my parents if they had to deal with them on a daily basis. I think my parents would probably just get in the car, drive away, close the garage door (leaving the girls home) and not look back, lol.

Jenn said...

@Pebbles,
LOL! Actually Scott is really the superhero (no offense, Mom) as he has still been juggling finishing up nursing school (with honors :-) all through this. Every quarter this past year he has worked ahead on his clinicals so he would be "ready" when we got THE CALL. Who would have thought that one month before graduation would be when Shelby was transplanted. It really worked out great, except for the amazing amount of stress he's been under! I cannot imagine taking tests and writing papers at this time. I just can't. Yes, my parents deserve a HUGE vacation (that they probably won't ever take), but it is so neat to so the relationship they have with my girls. When I get back home, Grammie and Papa get to be just that again - the grandparents. Of course, it will take Avery a while to realize that....

Anonymous said...

Hi Shelby,
Sorry we haven't posted in awhile, but my friend Samantha & I & Silly Mr. Ben have been doing a large charity event so we were able to raise money to help lots of other children,I am so happy that you are now at Kohls House ,as working on event for the Liver Foundation for years to see all the great work, to be able to pass the words about other living donors, I am proud to announce that I have over 180 facebook friends who have put on the 'Milestone " they are now all on the living donor list, I was so ready to cry< Happy Cheering ones> That because of you they are so on board, I loved the pic of you and the dog,,Way precious, well I have to go feed those silly cats here who think they are dogs, here is a link some of the pics from the event we just did, also have mom show you those silly cat pics,,Take care of yourself, xoxohttp://www.facebook.com/photo.php?fbid=10151587108591988&set=a.10151587108556988.440039.739756987&type=1&theater The party girls, One day at a time,,