― Tim Burton
Continuing on our scavenger hunt, the woman from the blind foundation gave us another name. A pediatricians name. Oli had already seen one since leaving the hospital, but we were not impressed.
The opthamologist told us to make sure that Oli’s pediatrician drew labs to check her pituitary gland. She told us that she knew kids with microphthalmia commonly had abnormal pituitary glands and that it was imperative to check the labs.
Her first pediatrician just blew me off with an annoyed look when I asked for the labs to be drawn. Apparently this was a common attitude with this particular group of pediatricians.
Don’t we need to check her pituitary labs to make sure she doesn’t need medication? Don’t we need to check her growth hormone?
No. We don’t need to check them right now. We’ll just watch her and see what happens.
Watch and see what happens? She’s not a science experiment or an action movie! I don’t want to just watch and see what happens! I want answers!
We will just wait until after you see the geneticist and see what she says. I’ll wait for her recommendations.
There was only one pediatric genetic doctor for the entire Las Vegas valley. The waiting list to see her was 6-9 months long.
Don’t you think we at least need to do an MRI to take a better look at her brain? Don’t you need to draw chromosomes? I’m sure the geneticist will want chromosomes drawn. What about her kidneys? The doctors at the hospital said that you should refer us to recheck her kidneys.
No. I’m not going to order any tests.
By this point she was really annoyed with me for questioning her. She knew, that I knew, that she was uncomfortable taking care of Oli. She had no idea what to do for her.
I left that appointment feeling frustrated and bewildered that a doctor wouldn’t want to look further into what was going on with my daughter. Why didn’t she want to help her? Now what?
Then we went to the open house at the blind foundation and received the name of the perfect pediatrician for us and for Oli.
Dr. Rosemary Hyun.
The day of Oli’s first appointment she came in the room and sat down.
How are you doing?
(You can guess my answer.)
I’m fine. Thank you.
I’m glad that you were able to meet another family with a child like Oliana.
Yes. The mother of the boy gave us your name. We weren’t very comfortable with Oli continuing to see the first pediatrician we scheduled.
I’m glad you’re here. Let me just take a quick look at her and then we will discuss what tests need to be ordered and if there are any additional things you want ordered.
She was asking my opinion? Really?
I was so surprised. This doctor was actually considering what we needed as her parents. She was thinking like a parent herself. What would she want to know if it was her child. I probably don’t even need to say this but, for a doctor, this quality is very rare.
After she looked over Oli carefully she began to write down a list of tests and labs to be ordered. She asked us if we needed anything else. Then she handed us the slip of paper detailing everything that she had ordered.
Cardiologist appointment for an echo.
Endocrinologist appointment for labs.
Urologist appointment for her kidneys.
MRI of her brain.
Lab appointment to draw her chromosomes.
A follow up appointment with her.
A referral for the geneticist.
It seemed like an overwhelming amount of appointments. Especially, since I was used to seeing the doctor only once every 3-6 months with my son.
But I needed answers.
As I walked out of her office a startling realization hit me.
Was this how the families of my patients in the NICU felt when I sent them home?
When I discharged them from the hospital with a list of appointments, doctor names, medications, medical equipment, and specific feeding times.
Was this how they felt when I carried their baby through the sliding glass doors of the hospital, handed them the car seat and 15 plastic hospital bags containing all of the things they needed to keep their child alive and said “Good luck”!
My experience with Oli began to give me a whole different perspective and a new found respect for the families of my NICU babies.
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