Port Trials and Other Stuff

It's not just "port wars" and it's not even a "war". It's that even with the "best" care, I have to stay vigilant. I'm the one with her the most; she's my only responsibility; she's my daughter. I have to speak up, even if someone could get annoyed. So far, every time I've "spoken up" it's been right. There was a near-miss avoiding insulin she shouldn't have been given, and now it's the port.

The original porta-cath was removed Wednesday, as the incision hadn't healed. I had squawked about that incision for days before someone took it seriously. The surgeon announced she would have to have a Hickman catheter to replace it. Nadine and I strongly felt she should have another porta-cath (less prone to infection, and less of a problem to use), instead of the "Hickman" (near surface, two lines sticking out, more frequent trouble with infection), unless there was a strong medical reason for the Hickman. Both the head of the oncology dept. and Nadine's doctor, Dr. Bruckner, told me the porta-cath would be fine; Dr. Bruckner also told me the surgeon wouldn't budge. . She said the interventional radiology department would probably do it I don't know why she didn't just talk to another surgeon. I found out that interventional radiology probably uses fluoroscopy, , which didn't thrill me -- Today I called a vascular surgeon, the father of my son's partner -- he thought the fluoroscopy used was minimal, and agreed that a porta-cath would be just fine. I met a patient who had the "Hickman" type of catheter, and she told me more problems with it - more incentive to get this done right.

Eric, the social worker, complimented me on managing to be civil even though I was upset. I was relieved -- I felt I sounded like a "bear". The head of the patient advocacy department said she'd trust me to advocate for her own child, and encouraged me to contact her if I wanted to do patient advocacy. As for me, I feel sad for people who haven't learned to speak up.

One more consequence of all the hubbub on Thursday -- I didn't eat breakfast until about 5PM. Such is the life of a hospital mommy.