Sorry for no update yesterday.  After a rough day, I just didn't have it in me.  So I'll back up to yesterday and start there to bring you up to speed.  Cooper was continuing to spike fevers and with no further growth in any subsequent line cultures, Dr.

I think that about sums up the day.  Cooper has had a very hard day today.  He is struggling a lot.  His line cultures are growing lots of bugs again and we are faced with having to restart antibiotics that we really need to save.  In addition to the high fevers, he went ahead and scared me more than ever today by needing to have a code called on him.  He wasn't getting enough oxygen (turns out his vent was broken) and his blood pressure plummeted.  He had to be bagged and they gave him a dose of epinephrine to get things going again.  They also pushed a ton of fluids and the combination worked.  He is needing a lot more vent support at this point and we are working on getting some of the extra fluid off of him with lasix.  With how he looks right now, there is no way he will go to the OR for closing on Wednesday like we had hoped.  He is just way too swollen and having way too many problems.  Dr.

First of all, Happy Birthday Momma...I know you are reading this!  I love you and we couldn't do this without you! 

After the day Cooper had yesterday, I expected him to struggle today.  But true to form, Cooper has amazed me again!  Obviously, our idea of a good day is a whole lot different than most people's, however, I left the PICU tonight knowing that Cooper is resting comfortably and doing well.  During morning rounds, we made some changes to his sedation meds and shortly after that, our pain doctors came around and made some adjustments to his epidural and methadone dosages.  The combination of all of those changes brought Cooper's heart rate down into the 100s to  120s for the first time since he came out of the OR.  He is much less swollen in his extremities and face today.  He was started on albumin and that has done wonders to bring the fluid back into his blood stream and control the third spacing issues we were having.  His main issues today have been that he has needed several units of blood and will most likely be getting more in the next hou

How do you measure success in a situation like this?  The surgery today did not go as planned.  When they got in to his belly, things were not what the doctors had expected.  About 2 hours into it, Dr.

Let's start with the good news of the day...NO REJECTION!  Biopsies were pulled from all over the place and there are no signs of rejection OR infection in the tissue.  This is wonderfully amazing news.  Aside from that, Cooper has had a rough day culminating in a big rush around to place and NG tube in a last ditch effort to decompress his belly or else he would have gone to the OR tonight.  Thankfully, with a lot of flushing and repositioning, we were able to get a little bit of bile and poop to come out of his ng, g, and j tubes.  His ostomy has had less than 10cc of output in 36 hours, so at the moment, it is useless.  The GI doctor who did Cooper's endoscopy and ileoscopy today said that he could see one stricture for sure and that he was pretty certain there was a series of strictures beyond that first one, but he couldn't push his scope through the tight area of bowel to see all the way down.  The dilated portion of jejunem is so enlarged th

We are finally, after days and days of pain and no answers, getting some answers.  They are not the answers we necessarily wanted to hear.

I am trying to be my usual optimistic self and see the good side of what is going on, but at this moment, all I feel is sadness for Cooper.  I am not going to go too far into it tonight, but Coop had a CAT scan of his belly today and it showed several bowel obstructions.  Tomorrow, the whole team is coming in to figure out what to do.  The feeds are off and he is on full pain meds again.  He also still has the same infections in his blood that were in his belly after the poop explosion from his colon.  We have at least another 14 days of all of the antibiotics which means we'll be here inpatient for at least that long.  Please just pray for Cooper.

Today has been rough.  Cooper has been okay.  His fever went away during the wee hours of the morning and has stayed down.  First thing this morning, we went down for his scopes and right away, I knew things weren't good by the look on the GI doctor's face.  The tissue in Cooper's small bowel is grayish and flat and looks like the surface is sluffing off.  Not good.  I thought that the camera was stuck in a clot of poop, but no - that was the tissue.  That started the day off not good.  Add to that the fact that Cooper's cultures from last night popped positive for gram negative rods and yeast and well, things were not great in here today.  He was off feeds for most of the day because of the scope and because he had to go down and get a new gj tube placed.  That helped with his energy level.  The odd thing was, his ostomy had barely any output at all.  All of the poopy stuff was coming out of his g tube drain.  Af

Please pray extra hard for Cooper tonight.  He has spiked the fever he has been toying with for a few days now.  He is currently shivering and miserable.  He has been cultured, but honestly, I don't see how any infections could get through the 3 antibiotics and caspo he is on.  The other going theory is that he is back in rejection, but I refuse to believe that.  He is going for scopes/biopsies first thing in the morning, so we'll see.  Please just pray that everything is okay.  There is talk of a possible release date late this week.  I so want to get him out of here and into our apartment.  It isn't home home, but it is our home while we are here and it is way better than being in the hospital.  Considering the 2 weeks we were inpatient leading up to transplant, Cooper has been inpatient for more than 2 months now.  We are both ready to sleep in non-hospital beds!