The Coopman is still struggling with his blood pressures being elevated.  However, they are slowly increasing his dose of niapride (I think that is what it is called - it's a BP med) so they can bring it down some.  The doctors are pretty sure he is reacting to the steroids he is on and that he will eventually even out.  They did change his clonadine patch this afternoon, just to make sure that the patch itself wasn't the issue.  It must not have been!  When I returned from lunch this afternoon (Kevin stopped off on our way back, so he missed it and he was sad!), Cooper was awake.  He wasn't completely awake, but they had turned down his cis (the paralytic) to make sure he still needed the hefty dose he is on to keep him still.  He was flapping his little hands and feet...not his whole arms and legs, just his hands and feet.  When he heard my voice he tried with all his might to open his eyes.  I talked to him and told him it was oka

Praises!  When I went to sleep last night, Cooper had been started on blood pressure meds because nothing else was working.  He was agitated and sweating with the high blood pressures.  This morning when I woke up, I knew right away that he was better.  His lips have been enormously swollen for 2 days now.  Today they are back to his regular pouty little lips.  In fact, the tape holding his breathing tube in place is all loose now because it had been stretched over his ginormous lips!  His blood pressures are much better this morning, too.  The plan is to go to the OR in the morning and close Cooper up!  PRAISE THE LORD!  What does this mean?  It means we are making baby steps towards getting off the vent and getting him awake a little bit again.  The closing of his belly will be a giant step in the right direction.  Over night, Cooper had a 700cc deficit in fluid, meaning he is peeing off more than we are giving

Just a short update tonight because Cooper is calmer when I am talking to him and right by him.  He is still spiking fevers and still running pretty high blood pressures.  He has had a dose of diarell to try and get the fluid to leave his body faster and they have doubled his lasix.  His heart rate is pretty good, so we don't think it is a pain or sedation issue.  The doctors are all pretty sure it is being caused by all of the fluid retention.  Please pray for lots of pee, clear cultures, no more fevers, and a restful night for Cooper!

Cooper behaved during the night, for the most part.  The GI bleed he had in his stomach was minor and stopped bleeding after about an hour.  His blood gases improved as the night went on and his vent settings are slightly lower than when I left.  He has a new device on his vent that is measuring his CO2 output, but that device is creating more issues because it causes his vent tubing to fill up with water.   The nurses are working on getting that thing off of there because it is not helping and his CO2 on his blood gas has improved.  Cooper is peeing a whole lot more today, so he is starting to correct his fluid imbalance.  He is getting some lasiks now to help with that.  He is also about to get another unit of blood.  Cooper is doing some things that he has never done before, too.  We think it is the steroids he is currently getting.  His blood sugars are usually low, but right now, his sugar is 310.  After the lasiks, th

This is going to be a quick update because I am really tired and want to hurry up and sleep a little so I can get back to Cooper.  I waited for his midnight blood gas before I left to come back to the RMH.  He looks a little worse from that stand point and his vent settings (pressures, breathes per minute, and O2 concentration) have all been bumped up even more in an attempt to help with that.  The transplant NP came by to assess the drainage that is soaking through Cooper's packing and sterile towel dressing.  She was happy that it isn't blood and was going to run to the OR, where our surgeons are saving another life at this moment, to see what they want to do.  He is more swollen in his belly area tonight so we are thinking he is just draining the fluid out of his belly through the open incision rather than through the 2 perenial drains that he has.  I am waiting to hear from Kevin right now because as I was kissing Cooper goodbye, I was very close to

Cooper is having some issues start to crop up.  He is getting all out of whack metabolically at the moment and trying to run a fever.  His vent settings have had to be raised to try to help him.  He'll be getting more blood in a few minutes here because his H&H dropped way down.  We are praying this is just a blip and he keeps going strong.  His body is just very stressed out and showing it right now.  Please pray his temp stays down, his counts improve, and he continues to amaze us all!  Will update later from our new "home" at the RMH.  We have an address and everything...

Cooper had a pretty good night.  The ICU doctors switched his pain med to a morphine drip from the fentanyl and they added valium.

Here he is...the bravest and strongest little boy that I know.  Cooper did amazingly well in surgery today - all 10+ hours of it.  He surprised everyone by never needing blood or any help with his fluids.  We are pretty sure that it is because he was so tanked up when we got here, having gotten a transfusion on Monday.  He came into this huge surgery as strong as he could be and that allowed him to do so great!  The surgeons were very pleased with how the organs looked as they finished up.  Everything is nice and pink and pretty.  They left his incision open to allow for some more swelling that is inevitable over the next couple of days.  Once the swelling goes down, the surgeons feel confident they will be able to close the muscle and skin over Cooper's new gut.  We are feeling so incredibly blessed tonight.  We were very anxious to see Coop

Things are moving along.  We have had a big update from the surgeon and now a little update from the nurse since I last updated.  About an hour and a half ago, our surgeon came out to tell us that Cooper's new organs were in place and profusing well (so good blood flow).  He said that the fit was "snug" and so he doesn't think that they will be able to close him up.  They are making some extra plumbing to his stomach.  Coop's stomach is very small and every test he has had on it shows that it doesn't work - he has gastroparesis and his pyloris is paralyzed open.  They left a sizeable piece of his native duoduem in place, but said that it could cause problems and so we shouldn't be shocked if they have to go back in and revise that.  The extra plumbing to his stomach will be a piece of his new intestine that will be looped up to his stomach and they are going to create a new hole in his stomach to help with emptying.  They are hopeful

We just got our latest update.  Cooper is doing well in surgery.  They are working on taking out the old organs and the new ones have arrived and are being prepped to be put in.  He hasn't needed any blood so far and his vitals have stayed nice and strong so he is handling the enormous stress that this surgery has to be very well.  He is showing everyone how tough and strong he is.  Please keep on praying that he continues to hold up as the more critical parts of the surgery begin...cutting major blood supply to the old organs and getting that blood supply attached to the new healthy ones.  I'll update again as I can!