Finally some good sleep!

Poat surgery day two was no fun at all. Carson was very agitated all day long and only slept for sort 15 minute naps every once in a while and in between he screamed and thrashed. It was really no fun at all. Finally we moved the bed out of the room and the chair over and I held him and he slept for 5 hours! And since then minus a few hours here and there Carson has been calm and very sleepy. He is still on the morphine iv, but know we also have an awesome little button to push to give him extra. His personality is showing through here and there too so it's good to see him coming back to us.

Here ar some tid bits of what's been going on
-Repeat CBC after blood transfusion was much better. WBC was up from .7 to 1.8.
-two ultrasounds were completed (6/1 & 6/2) both showed no flow in graft
-repeat dray yesterday was improved. Guy still sounds "junky"
-yesterday morning arterial line removed and dex stopped
-moved out of PICU about noon yesterday. Have I said how great the nurses are up there? They are!!

We were told last night by the nurse that they changed Carsons orders and he was getting no more blood thinners. I knew this meant that the graft had officially failed, but I was also pissed that the Resident just changed the orders and didn't even tell us. We pretty much new this was going to be the outcome since right after surgery, but still. If the graft had worked they'd have come in patting themselves on the back all day, but since it failed they can't even tell us that. I had the nurse get the Resident on the phone since he wasnt at the hospital so he could tell me. Would have liked to make him tell me face to face just to watch him squirm....I'm such a nice person. Dr Pitcher is great! We absolutely love him, but clearly he needs to teach his students some bedside manner...don't worry I'll be sure to let him know.

We got moved down to 3rd floor yesterday morning. To a double room :(. Not too happy about this but we are making it work. Our "room mates" from last night are ver nice people with a tiny 6 month old baby. They got good news this morning and will be leaving this afternoon.

Besides tha AJ and Emily brought Kay up to see us yesterday which was nice and mom sat with Guy last night so Dave and I could step out for a minute. We got dinner and picked up a DVD of Mickey mouse clubhouse for Carson. It's been emotional and we are tired, but only a couple/few more days and we should be out of here.

Thanks for all the toughts and prayers over the last week. This proceedure was the only one that will "fix" Carson that we know of so it looks like we will be on to managing the symptoms of this blood clot/portal vein hypertension. There are lots of things that can be done, but none of them will take the blood from his portal vein to his liver so they aren't fixes. So basically now we wait until we have a problem and go from there. Not exactly what we wanted for Carson, but as Dr P said, lots of people with PVT lead long normal lives. I just pray that this condition doesn't define who Carson is.

Today our goals are to get out of bed and to get him to drink some clear liquids!