12/26 - Early Morning

I apologize for the brief and hasty post last night with no further clarification.  As you might imagine, we are incredibly worn out.  After an absolutely joy-filled day, we went out for our "Christmas Story" dinner. They were slammed.  I had no idea that Chinese restaurants were THE place to eat on Christmas.  No sooner had they started bringing out the food, than Jim's phone rang.  It was the hospital. He walked out to the entry way so he could hear better.  All I could hear was..."Nephrologist...creatinine...transfer."  We rushed to get all of the food packed up, paid the bill, and left.  My mom headed home, and we flew around the house pulling together what we might need for at least one overnight stay.

When we got there, the Dr. was on the phone with the Dr. from the new hospital.  When she was finished, she filled us in on everything that had transpired.  One of our nurses noticed that Sam had been having low urine output ever since the trach procedure.  Sometimes after surgery, patients don't have as much fluid output, so they thought it might be that, but started keeping a closer eye on it.  As soon as it was clear it wouldn't get better, they did a CT scan on his belly to check organs, (that was clear) and they ran a bunch of blood tests.  His creatinine levels were through the roof, indicating kidney failure at some level. This could explain a whole slew of his problems.  He has been extremely puffy (we had attributed that to all the meds he's on), and his blood pressure and heart rate are really high (we had thought it was brain related, and they may have just been compensating for kidney issues).  At Medical Center of Plano, once they got those results, they contacted the nephrologist.  He was unable to administer any treatment because there is a significant difference between adult kidney treatment and pediatric kidney treatment. There is no pediatric nephrologist at the hospital. While Sam is adult-sized, they did not want to risk it with his age, so the decision was made to transfer him to Children's in Dallas.  

It took a bit for the team to get to Plano, but they spent an eternity disconnecting/reconnecting him for transport, double checking lines, adjusting sedation, etc.  The nurses and trauma doc with whom we've worked since this started were kind of emotional, and asked us to please keep them updated on how Sam was doing.  They had invested so much time and emotion and love in him, and now they weren't going to get to see his recovery.  That was almost the hardest part of the whole thing of leaving this place. There was a certain level of comfort, knowing the people and the place, and also bonding with the families of other patients who were in the same state of tenuous state of raw emotional vulnerability. We were all traveling the same road more or less and became an odd sort of family, swapping stories, and praying for and supporting each other.  It made the rush-rush nature of our departure even harder, and we will certainly continue to hold all of these people in prayer.

They finally loaded Sam up, I road in the ambulance with him, and Jim followed in the car.  As we came into Dallas, it was lit up more so than usual to celebrate the Christmas season, and when we pulled into the hospital, if we hadn't been here for such a dire reason, it would have been even more spectacular.  I'm not sure how many floors there are here, but this place is insanely huge, well manicured, and close to the rest of the big, fancy buildings of downtown Dallas.  (We are not a fancy people, but we do love the city atmosphere.)  They got him to his room, and a massive team of people started reconnecting him and assessing him.  I gave some details about what had happened to this point to someone, and then we had to take care of some paperwork in the waiting area.  As we didn't get to partake in Chinese Christmas, while we waited, we feasted on Chili Cheese Fritos and Peanut M n M's. Not exactly what I'd usually prepare, but it was a lot less clean up.  After waiting for a while, we decided to go back and check on Sam's status.

First off, because he came from another hospital, it is standard procedure that if you get near him, you must wear a mask, gown and gloves.  He is in a much bigger room, and even has his own nurse. Additionally, the charge nurse was in last night helping with all of the connections.  His room had both a pull out sofa and a reclining lounge, which will make staying here so much easier.  We have always heard wonderful things about Children's--it doesn't matter which one.  In fact, Sam's already visited a different one once. (Please recall Disney burn incident, 2001.)  From the moment we were told we were coming here, we were told that Sam would be well cared for.  So far, that has most certainly been the case.

So, where do we stand healthwise?  When we got here, they explained that in order to try to get his kidneys in balance, they would push a lot of Lasix.  They wanted to see if his kidneys could recover on their own without more invasive procedures.  At 5am, we were woken up by the doctor.  It did not work, and Sam would need CVVH dialysis.  This is a temporary form of dialysis that works on a continuous basis via catheter placed intravenously.  It is different than standard dialysis because in that, fluid is removed every so often, which is harder on other systems and processes, including blood pressure. We are hoping that this is one treatment that Sam doesn't reject, because it may be the key that resolves even more of his problems.  Right now, we have been booted from the room so they can complete the procedure, and hopefully we can get back in to see him soon.  

We are still very positive about his recovery, and we're taking this as just another setback that has ultimately put Sam and us in a very good position.  We loved the first hospital and the people, and they did a tremendous job keeping this boy alive.  We also know that he will receive remarkable care here. Thank you for your patience after yesterday's extreme highs and lows, for sticking with this uber-long post, and for continuing to offer up prayers on Sam's and all of our behalf. I'm leaving you with the new early morning view.