CHOP

karate....    CHOP!!!

 

haha... we took Jackson to CHOP for a second Uro and Nephro opinion.

It was a nightmare just trying to get he appt and get it paid for... literally HOURS on the phone with hospitals and insurances.  But it only took us 1 1/2 hours to get there... so we were 1 1/2 hour early!!! Whoops!  It gave Jackson time to play.

 

At Uro we met with Kristen a NP who took a quick history and peek at him and then she brought in Dr Shukla.  "Unfortunately we didn't receive his records, only his films..."

aaaaaaaaaaarrrrrrrrrrrrrgggggggghhhhhhhhhh

I spent hours confirming that everything was sent and received.

 

So, we continued,  He feels that everything has been done right up to this point, but thinks that it would be good to have a Urodynamics Study done to check Jackson's bladder pressures and also to have Mag 3 Renal Scan with Lasix to see how the urine travels through the kidneys. If we decide to transfer to his care, he'd like to take Jackson back to the OR to Peek inside so he knows everything that is going on and then he'd leave a catheter in to do the studies.  This turned Jason off right away.  He doesn't want Jackson to be tortured more - understandable. (The NP later called to say that the records were there but in the wrong place).

 

 

Then we met with Dr Meyers who had a nice English accent and was a lot slower on the computer - he had to input all of our history since "we just got your 208 pages of records yesterday so I haven't had time to go through everything." Yeah Right!!!! Again, I confirmed that records arrived a week ago. Frustrating... He basically told us multiple times that he really likes Dr Muchant (Our current Nephro) which made me feel guilty about being there.  He was unable to explain why Jackson's healhty BUN has jumped up to 26, giving me poor excuses that were all easily arguable.  We have conceded that if no one else is worried, than we should not be either (?).  He agreed with our current plan of care, except that he would do labs every 3 months, rather than 6 months.  We asked straight out "We really just have to sit and wait for his kidneys to fail???" and the answer was "Yes". It was frustrating, however, when we asked him if we could have the MC records when he was done with them (since we get charged $1 per page) and he said No in a round about way, though we asked repeatedly.

 

So... it looks like right now we'll stay with GMC and request the two more studies to be done. Of course, they said that if infections start again, the game plan changes!!