Oct 10, 2008

Update on Addyson's Surgery

Addy did well, although it was a very LONG night here at home with those wires down her nose and attached to her stomach on the outside too. Those wires were connected to a monitor. Each time Addy woke up, fell asleep, was eating, stopped eating, coughed, gagged, or vomited we had to push a button and make a notation in a journal. The wires were not very long, so we couldn't let her walk around and play without being right by her side moving that monitor. Her arms were in braces to keep her from bending her elbows so she couldn't pull the tube out. It was stressful for her and she hated all that tape stuck to her face. We went back today and had the wires taken out. We will have results in 3 weeks.

Remember when she went in for the Upper GI and the Small Bowel Follow Through? It was near the end of September. They refused to do the Upper GI since she doesn't take liquid by mouth. I requested that they call the GI specialist that wrote the orders for the test to be done, as I was sure he wouldn't have written for it if it couldn't be done. I had read about other G-tube kids having the test done, but the doctor conducting the test assured me that there was nothing they could do and they wouldn't do the test. I spoke with her GI doctor yesterday (as he was the one conducting the Endoscopy and such) and informed him of the issue with the Upper GI. He was very upset and said that it should have been done. He said they could do it with an NG tube (feeding tube through her nose, just as we used to feed her). Of course, we now have to go back and have that test done. It is infuriating because it means another trip to the hospital... especially now that cold/flu/RSV season is upon us. It means another day off of work. It means more copays. It means more parking fees.... the list goes on and on. I'm very upset that Addy has to go through all that again. Anyone know of a way for me to "nicely" get that taken care of? I want them to know we aren't happy, I just don't know the right person to go to.


JessieLeigh said...

Thanks for the update. I've been thinking about you guys lots.

I'm so sorry to hear about getting the run-around for the Upper G.I. procedure. As far as how to express your dissatisfaction, I tend to just talk to whoever I was closest to. When C. broke her leg when she was 10 months old, we had a horrific experience in the PICU. I ended up seeking out a social worker.

I would recommend either talking to a social worker or asking Susan S. who you should contact. I hope you get some resolution... and at least some validated parking!

Ryann said...

I snicker when I think about that darn parking. It seems so insignificant, but still burns my nerves to have to pay it! Today we were at the hospital less than 30 minutes and of course paid $2. I'll be contacting a research nurse we are still very close to. When I had dificulties with a dietician there, she took my complaint to the head of Neonatology! I haven't heard from that dietitian again! Maybe that research nurse can at least point me in the right direction.
Thanks for your advice & concern.

Anonymous said...

I think that some hospitals have a patient advocate or ombudsman type position. That's where I'd start or with the social worker. As a social worker, I can tell you that even if it isn't a role they usually play, they will know who to direct you to.

JessieLeigh said...

Head of Neonatology, eh? Dr. L, by chance? He took care of our peds fiasco there. That man is a walking example of "Speak softly and carry a big stick." So gentle, but I've yet to meet a soul who doesn't jump when he says jump!

Ryann said...

Yes, Dr L is the BEST!!!