Frustration with Doctors Continues
My anxiously awaited (free) consult from our doctor from Boston Children's comes in through his assistant. Bee will need surgery and sooner is better than later. They recommend flying to Boston for an in person consult. James and I discuss and wait for our Shriners appointment later in the week
I was a bundle of nerves getting ready for our telemedicine appointment. I carefully dress age appropriate and request James doesn't wear a helicopter t-shirt with skulls on it. There are several of those floating around our house. There is no pink in my hair and Bee has on her new bow t-shirt for the occasion. I insist on her wearing a big girl t-shirt so we can take off her top easily for the doctor to see her shoulder.
I was, of course, running out of work to pick up Bee from my Mom's and sent James ahead of us to meet our Shriner to fill out paperwork. We ended up arriving right on time to the Shriners Center and headed into a back room with a medical set up. Bee was fascinated.
We anxiously waited for our doc to appear on the screen and all Bee wanted to do was crawl around. Um not a chance. I fished through the diaper bag and no pacifier. Ugh. I came up with a rattle instead.
When the doctor came on she asked us why we were there. I proceeded to cuss her out. Ok not really. I explained and asked if they had received the x-rays I sent. Oh yeah.... let me look at those. Betsy falls on floor and rolls around. Or wrangles a baby, digs through the diaper bag again and gives fussing 11 month old a bottle to try and get through the time it takes the doctor to look at the x-rays.
And then to our great surprise the doctor tells us that she doesn't think surgery is the right treatment and that her shoulder may get better with time. I stumble over my words because this is a HUGE surprise to us. We stumble through the rest of the appointment and I manage to insult the doctor because I mention that we've gotten another differing diagnosis. She crisply tells me that her opinion is her opinion. I ask some follow up questions to try to clarify why I'm confused and she relents a little. She tells me it "must be hard for me" to hear varying treatment plans. UM YEAH. We schedule a follow up for a year later. I nearly burst into tears in the parking lot. I rehash the appointment to my father and then my mother with no clear path to follow. James tells me someone at his work read an article about early anesthesia to children and I almost take off his head. Not. The. Time.
So here we have our 3 doctors:
1) Tucson doctor- most likely need surgery but not now. Follow up at 18 months
2) Boston doctor- need surgery for sure, sooner than later
3) Los Angeles doctor- no surgery, it may get better in time. Follow up at 2 years old.
My head is going to explode. With our 3 doctors we get 3 different treatment plans. No one agrees. No one knows how she'll progress physically and when is the best time to do the surgery if needed. Only the Tucson doctor has even done a physical evaluation on her which is my bone to pick with the LA doctor. She tells me most kids never even know they have this. Yeah that's not possible with Bee and we never even got to show her Bee's shoulder. I want to quit and bury my head in the sand.
The only thing I know is that we wouldn't do the surgery before she was 2 years old. I need her walking and somewhat talking before I will do this surgery. James and I have agreed to take a break from all the doctors and research. Thank God we have time on our side right now and nothing is urgent. We will go see yet another doctor next year sometime and see if someone can freaking agree with each other. James and I will continue to observe Bee's growth and the severity of the deformity. I will throw my concentration onto things like a 1st Birthday Party, a 32nd birthday, Thanksgiving at our house for the 1st time and Christmas. It will be hard to completely ignore because I see a bone poking out of my sweet daughters shoulder every time she moves her arm when not covered in clothes but I will try.
I was a bundle of nerves getting ready for our telemedicine appointment. I carefully dress age appropriate and request James doesn't wear a helicopter t-shirt with skulls on it. There are several of those floating around our house. There is no pink in my hair and Bee has on her new bow t-shirt for the occasion. I insist on her wearing a big girl t-shirt so we can take off her top easily for the doctor to see her shoulder.
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| Bee staring at the screen with a smile. She thinks Grandpa and Grandma are about to appear via skype |
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| Our view into the LA hospital |
When the doctor came on she asked us why we were there. I proceeded to cuss her out. Ok not really. I explained and asked if they had received the x-rays I sent. Oh yeah.... let me look at those. Betsy falls on floor and rolls around. Or wrangles a baby, digs through the diaper bag again and gives fussing 11 month old a bottle to try and get through the time it takes the doctor to look at the x-rays.
And then to our great surprise the doctor tells us that she doesn't think surgery is the right treatment and that her shoulder may get better with time. I stumble over my words because this is a HUGE surprise to us. We stumble through the rest of the appointment and I manage to insult the doctor because I mention that we've gotten another differing diagnosis. She crisply tells me that her opinion is her opinion. I ask some follow up questions to try to clarify why I'm confused and she relents a little. She tells me it "must be hard for me" to hear varying treatment plans. UM YEAH. We schedule a follow up for a year later. I nearly burst into tears in the parking lot. I rehash the appointment to my father and then my mother with no clear path to follow. James tells me someone at his work read an article about early anesthesia to children and I almost take off his head. Not. The. Time.
So here we have our 3 doctors:
1) Tucson doctor- most likely need surgery but not now. Follow up at 18 months
2) Boston doctor- need surgery for sure, sooner than later
3) Los Angeles doctor- no surgery, it may get better in time. Follow up at 2 years old.
My head is going to explode. With our 3 doctors we get 3 different treatment plans. No one agrees. No one knows how she'll progress physically and when is the best time to do the surgery if needed. Only the Tucson doctor has even done a physical evaluation on her which is my bone to pick with the LA doctor. She tells me most kids never even know they have this. Yeah that's not possible with Bee and we never even got to show her Bee's shoulder. I want to quit and bury my head in the sand.
The only thing I know is that we wouldn't do the surgery before she was 2 years old. I need her walking and somewhat talking before I will do this surgery. James and I have agreed to take a break from all the doctors and research. Thank God we have time on our side right now and nothing is urgent. We will go see yet another doctor next year sometime and see if someone can freaking agree with each other. James and I will continue to observe Bee's growth and the severity of the deformity. I will throw my concentration onto things like a 1st Birthday Party, a 32nd birthday, Thanksgiving at our house for the 1st time and Christmas. It will be hard to completely ignore because I see a bone poking out of my sweet daughters shoulder every time she moves her arm when not covered in clothes but I will try.
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