Saturday, January 08, 2011

On losing confidence in medical professionals

So, when I first heard that Dorothy was going to need surgery to repair the cleft in her lip, I really wasn't worried at all. The cleft team at CHOP (Children's Hospital of Philadelphia) would be taking care of her. She would be in the hands of the best Children's hospital in the country. What more could I ask for?

Last month, when I met with the surgeon, I was still pretty confident. She told me what the surgery would be like, and walked me through the process. It seemed fairly straightforward. Then she told me that I had to stop feeding Dorothy six hours before the surgery, and could give her clear liquids, like Pedialyte, until two hours before the surgery. I said, "Breastmilk is a clear liquid, right?" And she said it wasn't, and I had to stop breastfeeding six hours before. That didn't seem quite right, and sure enough, when my pre-op packet came in the mail, it said that I could breastfeed until three hours before the surgery (six hours was the standard for formula feeding). I was a little disappointed to have been given false information at a hospital touted as breastfeeding-friendly, but not entirely surprised, and since the correct information came in the packet, it didn't really shake my confidence too much.

Then the time came for the pre-op anesthesia consult. A few days beforehand, I received a call from the ENT (ear, nose, throat) department. They said I had to bring her in so they could take a quick look in her ears to make sure there was no fluid, which could cause complications with the anesthesia. My anesthesia appointment was at 2:15, so they scheduled me for 12:15. I wasn't sure why a quick look in her ears would take 2 hours, but I figured I could at least get lunch between the appointments.

I arrived at ENT at 12:15, then sat in the waiting room for almost an hour. When they finally called me back to a room, the nurse practitioner seemed to have no idea why I was there. I said we just needed someone to look in her ears to make sure there was no fluid before the surgery. The NP looked in Dorothy's ears, said they were fine, then fumbled to find the right words to put into the computer. It seemed to me like she had never heard of a healthy baby having her ears checked before surgery before. She left, and said the doctor would be right in.

Then I waited another hour. I called ahead to the anesthesia department at 2:15 to let them know I was here, but still waiting to see the ENT doctor. At about 2:30, I went back to the front desk to see if we had been forgotten. They said the doctor had our chart, so he knew we were there. I went back to the exam room and fell asleep in the chair while Dorothy slept in the Ergo.

The doctor finally came a little before 3:00. He seemed to have no idea what to do with a healthy baby. He looked in her ears, said there was no fluid, so she wouldn't need tubes, but maybe she would need tubes later. I was really confused as to why she would need tubes later, since there was nothing wrong, and I asked what I should look for to know if there was fluid in her ears, and he gave me a less than helpful answer about things getting worse. Which didn't make any sense, since there was NOTHING WRONG WITH HER EARS. I just chalked it up to a medical professional who only ever sees sick babies just assuming that all babies need tubes, and rushed upstairs to anesthesia.

I didn't have to wait quite as long there. I guess it pays to be 45 minutes late? They weighed and measured Dorothy, then I waited in another exam room for a while. A NP came in and she seemed to be very knowledgeable about anesthesia and the procedures for surgery. She seemed not to know much about babies, though. She took my pre-op hand-out to write in the date of surgery, and, reading off the sheet, told me I could breastfeed as much as I wanted until three hours before the surgery, then I could give clear fluids, like water, until two hours before. Water? Did a medical professional really just tell me I could give a three-month-old baby water? (Experts fairly universally recommend against giving water to babies under the age of six months.) She then got a thoughtful look on her face, and asked me whether I would be able to breastfeed after surgery, because it was on her lip, and I told her yes, they actually encourage it because it helps the mouth find its correct shape. She asked me if I needed my parking validated, and I said, "No, I took the train. But I know I'm supposed to drive on the day of surgery." She responded, "Oh? Did they tell you that?" Yes, it was in the pamphlet YOU GAVE ME!

At this point, it was 4:00, and I was tired, hungry, and fairly disillusioned. I finally got to change Dorothy's diaper-balloon, then we headed over to the lab for a blood draw. The lady who took her blood was really sweet, and she was about to become a Grandma, so she was very interested in the Ergo carrier. She told me that Dorothy was hungry, but I reassured her that she was just tired from a long day of interrupted naps. She insisted, and I said she had nursed five times in the four hours we had been there, so I was pretty sure she wasn't hungry. She then got this surprised look on her face and asked me how you can tell a breastfed baby was getting enough, and I found myself explaining the basics of breastfeeding to her. Ultimately, I guess it doesn't really matter if a phlebotomist knows anything about breastfeeding, but I was just surprised that someone who works at a "breastfeeding-friendly" children's hospital would ask me a question like that.

All in all, I was fairly unimpressed with my whole experience. Everyone was nice, and very knowledgeable about their specific aspect of the surgery, but no one seemed to know the whole picture. It seemed like the right hand didn't know what the left hand was doing, which is all well and good when you're giving to charity, but somewhat upsetting when my daughter's life is in your hands. Maybe I'm just not used to this hyper-specialized model of medical care. My dad was a nurse, and he always seemed to know something (usually a lot) about everything. I'm sure everyone coordinates better on the actual day of the surgery, but it's awfully easy to imagine something going wrong after an experience like this.

When I got home, I looked at the website again, and discovered that Dorothy's surgeon was appointed in 2010. I'm sure she's still an excellent surgeon, and I have nothing to worry about, but it does explain why she seemed to not be very familiar with certain aspects of the process.

And now that the surgery is two weeks away, it's become much more frighteningly real to me. I keep closing my eyes and picturing my sweet little baby with a red, puffy face and stitches and elbow restraints. I picture her whimpering because it hurts to nurse, and struggling in frustration to get her hands to her mouth to suck on her fingers. I feel terrible that I have to put her through this, but I know the sooner the better. I just want it to be over with now, but I worry about that little cough of hers, and that she won't be healthy enough for the surgery and we'll have to reschedule and wait that much longer. Or I worry that I'll think she is better, but then the cough will come back during surgery and cause the surgeon's knife to slip. I'm trying not to worry, and I was doing so successfully until my whole pre-op experience left a bad taste in my mouth. Which is awfully ironic because the point of the pre-op appointments was, at least in part, to make me feel more comfortable.

I know everything will be fine. I know all the information I need to know is in the pamphlets and on the website, so it doesn't really matter if I was told the wrong thing at the appointments. I know everything that happens the day of surgery will have to go on her chart, so coordination of care will be much more thorough than coordination of pre-op information delivery. I knew this time would come, when the surgery would go from being just "this thing that has to happen sometime" to being a Big Deal. I don't like to admit it, but I'm scared. I just want it to be over.


Anonymous said...

I would feel nervous too. Any time someone I know has to have surgery, I am nervous. I will keep Dorothy's surgery in prayer, as well as the surgeon, doctors, and nurses that take care of her, and for Dorothy's quick healing and recovery. And for you to have peace of mind, and that your mothers' love be the best medicine for your daughter. HUGS!

timollie said...

I know it's scary. It's a big deal any time anyone has surgery, especially one of our tiny babes. And it's hard when it's something that doesn't seem to be bothering them, and it feels elective - even thought it's not. Feels like you could put it off forever and everything would be fine. But know that you're doing the best thing for her, both right now and later on in life. The surgeons will care for her, and so will all of the nurses that you encounter. And maybe not everyone will have all of the answers that you're looking for, but remember that you're much more educated of a BF'er than most - you ask questions that many wouldn't, and you often know answers that many wouldn't as well.
It will be scary, but then it will be over and hopefully you'll never have to worry about surgery for either of your babies again.
Hugs and get well vibes to you all.

Julia said...

That is quite the experience. I do hope the day of surgery is much smoother. That would rattle my nerves as well.

I know that it is not the same thing, but when Teagan had surgery, I was so stressed out and exhausted. She was about 21 months and had to fast from the night before. Fortunately surgery was first thing in the morning (which was crazy enough to get out of the house that early at that point in my life). She parted well from me before the surgery and didn't take long after recovery to be reading to run around again. In fact, by the afternoon, I was completely exhausted and she was jumping off chairs. And she has no memory of it, but I still do. I guess that it part of being a parent.

EarthenForge said...

((Hugs & prayers)) I can't wait for this whole thing to be over for you guys.


Emily said...

Sounds like a pretty typical pre-op experience. I'm convinced that they teach doctors in medical school to make sure to screw up at least twice during the pre-op so that you'll overlook any minor issues during the actual procedure. We'll be praying for a smooth, easy surgery day. Hang in there!

Anonymous said...

What horrible service they gave you that day, and ALL that waiting. It seemed the ent doc thought you were getting tubes? Wrong surgery. Huh. Glad you can breastfeed 3 hours before...that's good. I would ask once there how long to surgery (schedule and reality might be different) so that you can nurse if things are changed in any way...

I'd be tempted to complain about the day to someone in the hospital who listens to that sort of thing.