Friday, April 22, 2005

Eh? What? What? – Part II

Today, Ellie was scheduled for a sedated Auditory Brainstem Response test at the Ambulatory Procedures Center at St. Louis Children's Hospital.

Ellie got sick on Monday afternoon. On Tuesday I called Children's Hospital – both the Audiology department and the Ambulatory Procedures Center (APC) – to find out if I needed to cancel her appointment. On Wednesday I spoke with Admitting, Audiology, and a nurse from the Procedure Center, who recommended that I have Ellie checked out by her pediatrician just in case. On Thursday we took Ellie to her pediatrician who said that it should be fine to go ahead with the test.

Friday morning, Ellie was not to eat anything after 5:00 am, so no breakfast after she woke up at 7:00. No clear fluids after 8:00 am. We got to the hospital at 9:30 and checked in through admitting. Then we went up to ENT and waited 45 minutes to see a doctor. We saw a resident who had a hard time seeing in Ellie's ears and cleaning out the wax (oh, how she screamed). He asked me several questions about her recent cold and had me sign a waiver explaining that I understood the risks of the anesthesia. "I'll want to talk to an anesthesiologist beforehand," I said. "Of course, I don't understand the risks yet." He impatiently assured me that I would see an anesthesiologist later and could withdraw consent at any time.

We waited in the ENT/Audiology waiting room for another 20 minutes or so until Audiology was ready to send us down to the APC. By the time we got checked into the APC, it was nearly 11:00, time for the test. Ellie's nurse checked her out, listening carefully to her chest and asking lots of questions about her recent cold. "It's going to be delayed," Ellie's nurse told me. "The anesthesiologist is tied up with another case. I'll keep you posted." She brought me warm blankets and a chair to prop my feet on while Ellie took a little nap in my arms.

A nurse practitioner from Anesthesiology came down to see us. She asked lots of questions about Ellie's cold and medical history and listened to her chest carefully. We waited another 2 hours.

At this point it's after 1:00 pm. I have a 1-year-old who has not eaten since dinner the night before and has not had anything to drink since before 8:00 this morning. She's been amazingly good, waiting patiently in the hospital for nearly 4 hours.

The anesthesiologist's resident came down to see us, assuring us that the anesthesiologist herself would be there shortly. He asked several questions about Ellie's medical history and cold and explained some things about the procedure, including the interesting revelation that Ellie might need to be intubated during the procedure.

Finally the anesthesiologist arrived. She commented on how cute Ellie is and talked in a sing-songy voice with overly simplistic explanations (a.k.a. 'baby talk') so I had a hard time telling when she was talking to Ellie and when she was talking to me.

Eventually she mentioned that we were not going to be doing the procedure today. Oh. Fascinating. First: we need to have a letter from Ellie's cardiologist giving permission for her to undergo the general anesthesia. This is the first I've heard of needing to involve Cardiology at all. Ellie had her heart surgery at this same hospital. Her Cardiologist works in the same building we're in. All of Ellie's records are here. I've given Ellie's complete medical history about 10 times this week alone to various doctors and nurses involved with this ABR and nobody mentioned talking to Cardiology. I'm starting to see red. The Cardiology sign-off is especially critical because of Ellie's "residual ASD" (atrial septal defect). WHAT?! I'm going to shelve my astonishment and confusion until I can call Ellie's cardiologist on Monday. As far as I know, she has no "residual" hole in her heart.

Second, and more importantly, there's the recent upper respiratory infection. She can't undergo general anesthesia within 7 days of having a cold, period. What?! And no one from ENT, Audiology, Ellie's pediatrician, the APC nurses, or the Anesthesiology NP or resident mentioned this? Ellie's dehydrated, starving, and has been waiting here for hours for this?

Oh, it gets better. Using very simplistic language, the anesthesiologist explains why she won't put a kid with a cold under. My adult translation is that colds stress the upper respiratory system. General anesthesia has much the same effect. The two stressors combined have an exponential effect and can cause really serious problems. In her sing-songy voice, the Anesthesiologist said, "Undergoing general anesthesia is the ultimate stress test for anybody, but it's especially dangerous for someone so small, and with a cold on top of it - I wouldn't want you to get home tonight, put her to bed, and then when you go to pick her up in the morning find her lying there like this-" She mimed a dead baby.

I thanked her politely for explaining everything and mentioned my frustration with the procedural snafus. It would have been nice to know ahead of time that we couldn't have the sedated ABR within 7 days of a cold. And that we needed a note from Cardiology. Her response was ridiculous, "Maybe you didn't tell the triage nurses that she had a cold? Well, at least you know now so it won't happen to you again." The she offered to have someone get Ellie something to eat and drink "right away."

"What does she eat? Does she take a bottle?" No, thanks. I had my own snacks and juice (in a cup, natch) for Ellie in anticipation of this moment, when I'd hoped that all this hearing stuff would be behind us.

Remind me. Why are we doing this again? What a terrible situation. I don't want to put my child through unnecessary risk just to satisfy the curiosity of her medical team about whether or not she can hear a full range of sounds. But I don't want to cause persistent developmental delays by letting a hearing problem go untreated at this critical age.

And I'm not thrilled about putting Ellie (and me!) through all this drama and stress again any time soon, either. Maybe I'll just request behavioral hearing screenings every 6 months until Ellie finally complies. At least they're risk-free. (She mimed a dead baby!)


Orange said...

Oh. My. God. Can you print out a copy of this post and send it to the anesthesiologist? She may not realize that she's coming off as subhuman, and she really needs to learn.

Sorry you and Ellie had to go through such a long and pointless day. I say you hold off on the test until she's older if her language development isn't markedly behind where the experts would expect it to be.

I've been hard of hearing since birth or early childhood (wasn't identified until age 3). I was slower to start talking than my sister, but did great in school even though I seldom wore hearing aids.

Is Ellie getting speech therapy? If so, is the therapist concerned about her hearing? If she's getting ST already, what's the harm in waiting 6 to 12 months before scheduling an ABR test.

PPB said...

utterly outrageous

ohmigod said...

I admire you for waiting for so long. I would have cancelled long before. There is no way in hell you should have even tried this crap with her cold. Who wanted this test? Her nurse and her resident are complete idiots who obviously weren't communicating with the doctor at the time. They could have saved you a lot of time. You should write a letter to the CEO of the hospital.

Redhead Editor said...

I'd like to mime a dead anesthesiologist! This is so frustrating that I respect you for not grasping someone's neck and snapping it clean off.

trisha said...

Yes, what Ellen said.

Wtf is wrong with these people? Why? Why, why, why do things like this need to happen? Why?

I am so upset by this....

Moreena said...

Let me add my own "ugh" to the chorus. Anesthesiologists can be the most frustrating doctors, bar none, in the medical field. At least that's been our experience.

On the other hand, I do agree that someone really really really needed to tell you this before you got there and waited so very long, and this wouldn't be the anesthesiologist but any of the medical personnel along the way. Just horrendous.

trisha said...

I keep thinking about this...I am so steamed...We should do something.

Psycho Kitty said...

I would think a letter of strong disapproval would be well in order.

she falters to rise said...

You have every right, if you can muster the extra energy, to complain to the hospital. If your child has had a recent respiratory infection, there can be no anaesthesia, period. They all should have known that, and you should have been sent away at check in. Hell, I learned that in one of my intro medical school classes, and I'm not even a medical student.

Second, if your daughter has had any type of ASD and/or related heart surgery, her cardiologist should be involved with the planning of any procedure requiring anaesthesia, even if it is something as basic as dental work. You should have been informed of this from the start.

Unfortunately, with today's medical system, being a parent means being a warrior. You're doing great, by the way.

I'm so very sorry for you and your daughter.

genevieve said...

As we say down under sometimes, strewth.
The first place I would complain, however, is your paediatrician, depending on how things work for you in the States. Over here, the paed is the main communicator between other doctors. He/she could have told you the cardio stuff and the anaesthetic info - the day before.
Medicine is excruciating when it does not work, and one of the greatest gifts we have when it does. Put that daft anaesthetist behind you, hopefully you'll never meet anyone that stupid ever again.

Amy said...

I have a 3 year old that just went through the same test. Unfortunately, we didn't get the results we were hoping for. I vented my frustrations on one of my posts on I am really sorry that it was rough. No one wants to go through it in the first place let alone adding all the extra frustrations as well.

KathyD said...

Dear Ellie,
As a mom, my stomach was in knots reading this account. I'm so sorry you had to go through this. Just for future info because this is over a year since you posted, but there is now new technology that will do full ABR hearing testing assessment WITHOUT sedation and anesthesia. And the medical personnel has advised you already on the risks associated with these. But if you need in future to have another ABR (Automated Brainstem Response test) then check out this site:
Kind regards,