"First Do No Harm"....

So yesterday was nerve racking, but I was making it through pretty good...the nurses were sweet and they knew I was worried about the possibility of Connor stopping breathing (or worse) during the infusion, and they tried to ease my mind by showing me all the important life-saving equipment hidden in the walls behind pretty pictures...(I never knew it was all there) So I was holding up good until this point...

Our doctor does not know the protocol (directions) for IV Decadron (the steroid Connor needs to start taking for 6 months) and we decided to put a call in to the "experts" up in IL. (the ones we couldn't go see b/c Connor can't fly)

I called Liz, she is the specialists wife/nurse practitioner/assistant, who I have spoken to before. She has always been nice-except last time I talked to her to tell her we couldn't fly with Connor, she was pretty rude, and said if we don't come now-don't bother coming later. She said this because the spinal tap they wanted to do on Connor for their research, needs to be done BEFORE the Rituximab he had yesterday is given and repeated 6 months later...they didn't seem to care about him-just their research..My son comes first and we can't hold off treatment indefinitely, because they need to do their test.

It rubbed me the wrong way-but there are only TWO OMS specialists in the whole country (possibly world) so I sucked up my anger and decided to call her today to ask how the Decadron is given and if pills are equal to the IV version.

She was nasty to me and told me she would not share the info with me and it was up to the doctor (her husband) and that even if our doctor here calls she said it was, "Highly unlikely that Dr. Pranzatelli would give him the protocol either" She said he is not their patient and they do not give that information out. She only acted this way once she found out Connor was receiving the Rituximab at that very moment-right before this, she was friendly and giving me an easier number to reach her at. ??? Aggg!

I held it in until I hung up and then a few minutes later the shock hit me! Here is possibly the ONLY man on the planet who knows what dose would be best to give Connor-but he refuses to talk to us, because Connor had the medicine that makes him ineligible for whatever study he is doing! The poor kid can't fly and even if he could I am SO glad we didn't make this trip to see these people. Our doctor here seemed shocked! He couldn't believe that another doctor didn't want speak to him about a little baby! How cold is that?

I just broke down and cried in the bathroom at the clinic-I am trying so hard to figure out what is best for my baby-and these people won't talk to us?

I am doing better today with the whole situation-I didn't really trust them anyway (bad vibes all along) soooo-on to the next plan...not quite sure what it is yet though, lol...

So-there it is, apparently when some doctors take the Hippocratic Oath, they forget about the "First Do No Harm" part. Sad.