Answering Your Questions

To answer Christy's questions in her comments to my last post:

Jack still has the nephrostomy tube in until next week. He has to go back to interventional radiology for a nephrostogram (shooting dye into the kidney) to see if the hole in the kidney is closed.  If the hole is closed, they will pull the tube.  In two weeks, he has to go back under anesthesia (I believe) to have the remainder of the stone removed.  I think the stent stays in for awhile, but eventually, that will have to come out too.

I am, of course, worried about the second procedure given Jack's broken arm.  He will need to be on his stomach again. I'm really not sure how they will protect his arm.  The break is near the shoulder, so it can't be casted.  For typical kids, they simply put the arm in a sling. They gave Jack a sling, but he really doesn't need it because he doesn't move his arm.  Wrapping the ace wrap around his arm/body is really what will protect it when he is not in bed.  It's been a huge challenge to provide his care with the broken arm because it's on the same side as the neph tube and to change Jack's diaper and check his neph tube, you have to roll him and, to roll him, you have to touch his broken arm.  It's fairly do-able with two people.  It's much tougher to not hurt Jack in the process when there is only one person doing the care - which is the case during the day.  You also can't put a shirt on Jack now because you can't move his arm without hurting him.  I bought a bunch of white t-shirts and a friend of mine made a cut down the arm of the shirt and ironed on velcro so that it can close like a hospital gown.  He won't have much variety in his wardrobe for awhile, but he probably doesn't care as much as I do. :)

I talked with the urologist today and he had heard about the broken arm.  I told him that when Jack comes back for the remaining procedures, I am wrapping him in bubble wrap!  I think the arm was broken when he was in IR on Friday having the stent and new neph tube placed because I didn't notice him being in pain until that night. But, it's hard to say exactly when it happened.

Jack is supposed to follow-up with the orthopedic doctor in three weeks.  Supposedly, the bone should be healed by then.  But, with all the manipulation that Jack still has to endure with the remaining procedures, I'm not convinced it will be healed in that time frame.

To answer Dana's question - yes, there is no question that his arm was broken at the hospital during one of the procedures.  Of course, it was not on purpose.  I warned the team every time I turned Jack over to them that they had to be careful because he was breakable.  I have no way of knowing how he was handled in IR or in the operating room.  I'm sure they understood that he was fragile, but I don't think they really understood just how fragile his bones are.  I'll be curious to see the reaction of the people in IR when we go back next week.

As far as whether I am happy with the care provided by Phoenix Children's this last stay - the answer is, yes. In my opinion, there is no comparison between St. Louis Children's and Phoenix Children's as far as overall being a top Children's hospital.  SLCH is in the top ten in the country, Phoenix Children's isn't even close.  I will continue to take Jack to SLCH to see his team of doctors, however, I need to be able to deal with his acute issues locally - whether I like it or not.  I was fortunate to be able to secure Jack a PICU admission during his stay.  The care in the PICU was comparable to the care at SLCH.  The attendings are around and accessible and when a test is ordered - it is performed the same day - not days out like Jack's prior PCH admission.  I'm very happy I didn't travel for this issue because there is just too much follow-up.

Thanks for checking in on Jack and for keeping him in your thoughts and prayers.