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Wednesday, May 09, 2007

ENT appointment

Arianna had her ENT appointment on Tuesday at 1:30 PM.

We had to drive into Providence to a building across the street from her NICU and next to the hospital I used to work at (no, not the one with her NICU, and yes, its a strange set up). Its horrendous down there for a number of reasons:

1. They're completely realigning the highway to 1 mile south of its current location.

2. They're building an expansion onto the new ED building (which is the project I worked on while there).

3. They're building a new NICU addition to the birthing hospital.

So I was dreading it all day.

We got there on time and there was actually free parking - which is impressive. I check in, fill out paperwork etc. all with a 13 month old on my lap (again, impressive). There were at least a dozen other kids there. A four year old came over to 'play' with Arianna and read books together, or actually I read books to the two of them. The four year old was called, then more, then more... and we waited.

Then the receptionist called 4 of us together and shuffled us off, military style, into 4 rooms.

Now I came armed, to this appointment. I had all of her medical records including the results of her 4 hearing tests. Copies of all the antibiotics she was allowed and notes from her pediatrician regarding all of the ear infections and sinus infections. I also had the notes from her hospital admission in January - her oxygen saturation rates returned to the 'normal' range after her nose was suctioned.

The doctor came in, said hello. Had me hold Arianna while he looked in her ears, said 'yes, there's a lot of fluid. Ok we'll order tubes.' I asked questions about the positive/negative of them and discussed how I didn't believe they would help, long term for her. He agreed but said they had to take the ears out of the equation. And he left. I felt so blindsided. I was so prepared with lots of documentation and educated opinions and didn't get to ask more than 2 questions. I felt like I should have asked more questions but it was obvious this guy was in a rush. I really wanted to ask about chronically infected adenoids and that its hard on Arianna when she can only have a few antibiotics. I'm concerned about the anesthesia with her history of ventilator use. He glazed over it like it was nothing. I don't think he even read her chart and knew her history.

I wish I had a choice of ENTs but it took months to get this appointment and the others were even longer.

We were there 4 minutes, tops. Maybe. He then went off to see one of the other 3 ushered in with us.

We were then shuffled out to the waiting room and waited an additional half an hour to meet with the surgery coordinator to schedule. At this point Arianna was very tired of being there and only wanted to be held, which is normally find, only this time she only wanted to be held if I was standing up - and this is a small waiting room. I was annoyed and frustrated.

Her surgery will be June 6th.

Kathryn wrote a really great post today about what a good doctor is/does in regards to his patients and parents of those patients. I think its a good read. I wish her ENT had the qualities of a 'good doctor' from Kathryn's post - I just don't think we can wait any longer, her speech is affected.

It's just tubes right? What can possibly go wrong? Why am I so reluctant/scared?

6 comments:

Laura said...

i am sure the doc or at least a staffer will contact you with pre-op stuff and q and a opportunities. also the surgeon will not be the one you need to go over the anesthesia issues with. it will be the anesthesiologist. make sure you give him/her or the pre-op nurse a heads up that your daughter is an ex micropreemie with chronic lung issues. that always gets the anesthesiologist running to you for more history.

Laura said...

oops! blogger posted before i could say good luck!

Jennifer said...

Great ideas! Thanks for the information. They told me they would call the day before to give me the time, I hope someone calls before then to get more information. If I tell the anesthesiologist about her issues the day before, there could be a problem!

Lisa said...

Jen, I also wanted to answer your question about tubes. When M got her tubes, she was only on her second ear infection but it would not respond to antibiotics. So we were forced to get tubes so the doc could "irrigate" her ears... sounds so awful! Since the tubes, they have gotten clogged and she has gotten one ear infection. They haven't helped her sinus infections at all, unfortunately.

Her caretakers at daycare have ensured me that kids are much healthier the second year... I sure hope so. We are sick AGAIN!!!

I hope all goes well with the tubes! And Laura is right, the anesthesiologist was the one asking a million questions about Margaret's time on the vent, CLD, etc.

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