New year, new PICC

The replacement PICC procedure went well. Dr. Cahill at CHOP was able to rewire the same size and type of PICC through the same opening, and it was able to be done without intubation, just sedation. There was some initial hold up in getting into IR because there has been some type of recall on the PICC that Peter was to receive, but after scouring the hospital, one was located that was the right size and type and not of the recall lot.

Overall the procedure went well and I was finally feeling relaxed. As we were getting ready to go though, I asked for a copy of Peter's labs so I could pass them on to the doctors and the company who prepares his TPN. This is a routine request I have wherever we go and labs are drawn. It is never a problem in getting the labs. I carry a folder of Peter's labs with me and in fact had gone into the folder to show one of the nurses in IR his last set of labs. To get a copy of labs this time though was QUITE the ordeal "due to HIPAA regulations," I was told. It didn't seem to matter that just two days ago that CHOP's ER was able to just hand lab results to me. This dept refused to give me a printout, BUT I was allowed to look at them and write them down off the computer screen. Then I said I really needed a printed copy too since they also were refusing to fax the results to anyone, so a phone call to medical records and a signed form later I got the printed copy. But even then the nurse wouldn't fax the labs over to Apria who was in need of them to update TPN right away if needed... instead the nurse showed me the unit's fax machine and had me dial the number. The absurdity of the matter didn't seem to faze her or the attending doctor (not Dr. Cahill)in the recovery area. So it goes so often at CHOP though... a frequent lack of logic when it comes to dealing with patients. Fortunately that does NOT seem to be a problem we incur at Children's Boston, which is another reason we continue to go there.

In our seven hours there, we ran into 8 people who remembered Peter from our seven month stay in CHOP. And we had two hellos passed on to us from people who heard Peter was in CHOP. Those who knew him before were all impressed with how far he has come along now. I told everyone I could about Omegaven. When we were in the ER three days before when the old PICC became dislodged, we saw two of Peter's residents who had cared for him during our seven month stay. They also were impressed with his growth, coloring, and general improvements. I hope that someone from CHOP can take the evidence that is seen with Peter and conclude that Omegaven is indeed worth using at CHOP too. It would be a logical (there's that word again) thing for CHOP to offer to parents for their children given all of the evidence out there, including the evidence of one of their former patients - Peter.