Thought everything was set

I am REALLY frustrated right now! When I spoke with the angio tech doing the coordination for my son's embolization, he said that everything was set for Monday, March 8, and that I would hear from the hospital today (and maybe even earlier) to set up admission and scheduling. Well today is here and not a peep.

I called this morning and left a message. Still haven't heard anything. Called this afternoon and the receptionist got a little snotty with me and I told her why I was calling again and she let it slip that the tech and the supervisor were STILL working on getting the room we need! I told her that I had been assured that it was gotten and scheduled LAST WEEK and all that would happen this week is that we'd be told when we have to be there on Sunday. Then she said that she shouldn't have said that and I asked for the supervisor's direct line.

Enough is enough son is having headaches every day which I am assured are due to the original injury which is not related to the AVM at all. Might not be and might be due to the stress of waiting for this procedure. I realize it's delicate, I realize that we want the best, but don't tell me that everything is done and ready when it isn't and that things are going to happen that aren't! Doesn't exactly give me a lot of faith in the staff and the hospital when that happens. I had better hear something TODAY or else I will go down there tomorrow, in person, and sit there until I get some answers.

These are the same people who told me that given the location and depth and bleed potential, my son would not have seen adulthood if we had not found this and begun treatment. Now it's okay to take our time and everyone is comfortable with that???? REALLY????? I am not comfortable with it and I am sure my son's dad isn't either. They need to get it together and get this done! We can't afford to leave the state and go anywhere else either so this it and it's supposed to be world class and tops in the nation. If this is the top I'd hate to see the bottom!

I could be overreacting here a bit, but I am really mad right now!

Hey I can only shake my head and swmpathize with you as I have had similiar experiences. I have essentially been waiting for three months for treatment to be scheduled for a variety of reasons, all with the hospital staff and out of my control and have literally had to be a pest and track down my nuerosurgeon via his cell phone to get anything moving!!! It’s sad but continue to be hard on them…after all it’s your son’s life and well being we’re talking about and you witness the symptoms on a daily basis! Hang in there.

Holly, we discovered through our process of scheduling with Lindsey, some of the politics that went on between our Children’s hospital, and two nearby adult hospitals. It was a similar, though not exact, situation. Our Children’s hospital doesn’t have an angiography suite, so we had to go to an adult hospital for that, as is often the case. The hospital that is connected to the Children’s hospital by tunnel, won’t let anesthesiologists from Children’s practice in their hospital, and they (until recently) wouldn’t do anesthesia on children. Great, that makes sense, doesn’t it??? We had to drive to a different hospital, and we really didn’t like the care there. For the actual embolization and surgery, our surgeon was able to work it out so that we could use the connected hospital while actually being admitted to the Children’s Hospital. It took some time to figure it out, and ultimately there was still some confusion because it wasn’t usually done that way, but it worked, and I know it is for the good of all of the kids in Knoxville. It is hard to understand things like that, but we can hope we are helping to make changes in the system. Our surgeon REALLY helped make that happen, and we are very grateful. If he hadn’t worked that out, we would have traveled for the surgery. Adult hospitals, just don’t treat kids the same as Children’s hospitals. I hope you get everything worked out! Keep us posted! We’ll be having another angio in April.

Holly Tautz said:

Thanks to all who commented with support and who’ve posted here with support.

I spoke with the angio dept supervisor who told me that it’s the other hospital that we have to use that does not want to give up that room “in case there MIGHT be” a heart cath or some other emergent condition that MIGHT happen and would need the room while we are in there. Further, it’s the management of that sister hospital (for adults) that is putting the roadblock up and doesn’t seem to understand that children require different treatment than adults and seems to think that children can wait.

Good grief! I am ready to go down there myself and camp out and raise cain until something positive happens! I cannot even begin to imagine a bunch of suits sitting there deciding whether or not my son “deserves” treatment now. I told the supervisor the same thing pretty much and said that my 12 year old is a sweet, loving, happy, smart, fantastic honor roll student and that I don’t want to lose that because somebody has a power stick up their butt. She agreed and was headed over there after our call to plead our case in person.

I swear that if something happens while the other hospital and its management are jerking us around, they will be slapped with the biggest, nastiest lawsuit I can manage and I will get Geoffrey Fieger to represent us because I live not far from his offices and he loves stuff like this!