Cooper has had quite a day.  This morning, he had his ileoscopy and things looked good to me and my non-doctor eyes.  Late this afternoon, Kyle came by to tell me that there is no sign of rejection and he is antibody free!  That is all music to my ears!  After scopes, the doctors rounded and we got the nod to come back up to the floor.  We didn't waste anytime and got upstairs to room 734 as fast as our nurses could move us.  Once on the floor, Cooper had PT with Matt and, not only did he sit on the side of the bed unassisted, he also stood for a few minutes next to the bed.  That is HUGE!  Just a few days ago, the doctors thought Cooper would be unable to move for weeks or even months.  But our amazing boy just can't be held down!  He doesn't listen to anyone who says he can't do something!  My sister Liz and her girls came to town yesterday, so I spent a lot of time with them today.  My wonderful new friend Jami came to t

Cooper can move.  Praise the Lord, our boy is able to lift his arms today!  He can get his cup to his mouth with a lot of work.  This is HUGE!  We were able to get him into a sitting position this afternoon, too, but his head control is not good.  That is the biggest challenge for Cooper right now because when his head gets in certain positions, it makes his airway smaller and his saturations drop very fast.  Hopefully he'll regain head control soon.  During the night last night, Cooper had a lot of very bad pain and we started him on dilaudid to help, in addition to his methadone.  His belly also blew up and started seeping puss from his incision.  He had x-rays that showed what we were seeing - extra fluid in there - but nothing else.  The Transplant Team came by to see him early this morning and again this evening.  The fluid isn't going away, but Kyle says that they expected this, given the way his belly looked when they wer

Let me start with the amazing news of the day.

I don't know any other way to describe how I am feeling right now...just helpless.  Cooper went to the OR bright and early this morning.  The news from the biopsies so far is great.  The preliminaries show huge improvements and now outward signs of rejection.  That is a huge PRAISE.  We'll get the antibody results back tomorrow and wednesday and go from there as far as what type of further treatment Cooper will get for the rejection.  He will definitely be continuing with IVIG therapy bi-weekly for the foreseeable future.  As long as things look good with the antibody studies, that may be it for now.  That would be fantastic.  Dr.

Just a quick update tonight.  It is a little tough to even read the sceen on my computer because my eyes are so sandpapery tonight.  Cooper has had a good day.  He is going to the OR tomorrow morning at 8am to be closed up and for his biopsies.  Please pray that all goes well and that the biopsies are perfect with no signs of rejection.  I'll update with how he does tomorrow!

Okay, so technically, it is the 23rd, but I haven't gone to sleep yet, so I am calling it the 22nd!  Cooper must have read my blog last night and decided he was going to make up for lost time on the blissfully boring day we had.  Right after I posted that, he started acting up.  His blood sugars went haywire and he was started on insulin during the night. 

I am sorry that I haven't updated sooner today.  There hasn't really been much to report and I cannot even begin to tell you how GREAT that is!  Today has been a day of calm.  Cooper has been very stable - his vitals are actually better than they have been the entire time we have been here.  And I have a theory about that.  I realize I am not a doctor, but I'll share my theory because some day  I may want to remember I had it!  I think that for the first time since the transplant, Cooper's body is finally resting and not fighting so hard.  This is not a bad thing.  He is still fiesty (I'll get to that in a minute), but he isn't having to fight and so he can rest finally.  I think that from the moment that colon went in, his body went into attack mode.  There was just something that his body decided it didn't like about the colon and so it has been fighting a war to get rid of it from the start.  Now that the colon is gone,

After close to 9 hours in the OR, Cooper emerged from surgery and came up to the PICU on the vent, with his belly still open, and down one whole precious organ.  The insanity of today has still not fully set into my brain yet.  Yesterday, we were hearing about the possibility of going home and today we are back in the fight to just make it through.  As I said in my previous update, Cooper's new colon died.  We are not certain why and the doctors said we may not ever really know.  Partly from rejection and partly from poor blood flow is their best guess.  Whatever the reason, the whole organ had to be removed.  Because the tissue was dead, it basically started to break down and allowed stool to seep out into his entire abdominal cavity.  Obviously, this is a massive source of infection and Cooper has been running a fever since before going to the OR. 

Cooper still has another few hours to go in the OR as the team works to clean up his abdomen and remove his entire colon. The whole organ was dead and just broke down in his belly and started spilling stool into his abdomenal cavity.  I am trying very very hard to remember that when we very first started this journey and listed Cooper, we assumed that he would have a permanent ileostomy and a useless colon left over from his own body.  We have done all we can to give Cooper the most normally functioning bowel we could and, despite our amazing doctors and all of the best efforts, his body just didn't accept the colon.

Please pray and pray now.  Cooper has a perforated bowel and is going back to the OR any minute now.  His scopes weren't great this morning - ulcerations in the small bowel and very swollen tissue in the colon.  Right now, he has poop pouring out of incision.  Not good.  I just want him to have a break.  This poor baby just can't win.  Please pray.  I'll update more when I can.  And right now, I could really use a drink.